2013 Year End Review

Is it just me or has this year gone by fast? It could be that I spent the first several months of the year recovering from arthroscopic FAI/labral tear hip surgery, but either way I think as they say the years do seem to go by faster as you age!

2013 has been a year of great blessing as I was finally awarded disability after a 2 year wait, but it's also been a year of great disappointment and hurt as two full-time church ministry positions (one we had been waiting on for 8 months) fell through for my husband and he continues to work the horrible, long hours and low pay of retail management. The past 3 months we have struggled to understand what God is doing in our lives or what He wants us to do, but we continue trust in His mysterious providence.

I've been a poor blogger this year thanks to headaches that began after I did an intense juicing detox this past summer (in hopes of it helping with my pain levels). I had a headache every day for 2 months that no medication, rest, or alternative medicine would touch! I continue to get them periodically now, but I am grateful to God I no longer have them every day. I do not know what caused the headaches, but my theory is that the detox and diet elimination (no sugar, gluten, or dairy) I tried for 3 months was very labor intensive and the long hours cooking and standing caused muscle compensation and strain resulting in headaches. I continue to try to eat as "clean" as I can because I do think diet affects the way we feel (though I am confident it is not the soul cause of my chronic pain), but I no longer am adhering to such a strict diet because my body could not handle it!

I am now 1 year post-op from hip surgery. In the last 3 months I finally feel like some of my surgical pain and muscle soreness has gotten better, but I still struggle to lay on my left hip for very long and I still have major muscle tightness (particularly in my IT band, adductors, quadricep, and psoas - though it's hard to tell how much of that is just from long standing muscle compensation and pain). My hip pain was not my worst pain pre-op and most days it is still not my most debilitating symptom. But I do struggle with hip pain if I am on my feet or walking a lot. Overall I would say that I did not see the effect from surgery that I had hoped (namely less overall pelvic pain and improved ability to sit), but I do not regret having the surgery. There were some scary days early in my recovery when it seemed I might have developed full blown CRPS, but while I do have symptoms of central nervous system sensitization I am grateful they are not as severe as they could be.

I have not done a lot treatment-wise this year other than occasional physical therapy visits, self PT (I've found the Therawand to be helpful for pelvic floor pain as well other tools mentioned here), massages (I've found I function much better when I get bi-monthly massages), and of course medication. The first 2 years of my debilitating pain I tried many invasive treatments that only caused my pain to flare and did nothing for my overall pain. Until there are major changes in diagnostics and treatment for pelvic pain I plan to continue to focus my efforts on pain management in the future.

I have spent very little time researching causes and treatments for my pain this year and have for the most part stayed away from forums and message boards. There is definitely a time and need for those things, but for me it has been good to focus on the life God has currently given me this year instead of worrying and wishing for a better quality of life. My daughter is growing up before my eyes so I've been trying to be as involved in her life as I can which leaves little energy for things like pelvic pain forums and blogging (one day my daughter will be in school and there will be plenty of time to work on my writing!).

Ever since my pain became debilitating and I began to accept my new life my biggest prayer was that if it was God's will for me to have chronic pain that He would help me get to a place where I could manage my pain and have a decent quality of life. In my mind I thought that would mean I would have pain managed by only occasional ibuprofen or Tylenol and I could sit for a couple of hours before having to stand up due to pain. I am FAR from those standards of pain management, but if I am very careful to stay within the limitations I've learned over the years including: very limited sitting, limited walking, taking medications, resting frequently throughout the day, getting frequent massages, stretching, doing physical therapy, taking warm baths, etc, many days I am able to care for my family, avoid pain flares, and have a decent quality of life (though very different from most 30 year old mothers).

I still miss my old life, struggle to fight for joy in the Lord, and am often lonely, but I am very, very grateful for how God is sustaining me in my journey with pain. 2013 brought many surprises (including a new puppy) and graces and because of the hope in knowing Christ as my Savior and Lord it is with joy that I can look forward to 2014 and what the God has in store for our family. I hope you've come to know that peace and hope and well. If not, feel free to email me at purposeofpain (at) gmail.com I'd love to talk with you more!

Hip Update & Prayer Requests

It's hard to believe I am already a little over 6 months post-op from my left hip FAI/labral repair. Since I last reported I have not seen much overall improvement in my hip recovery. I continue to have decreased range of motion, especially with external rotation (I can't sit crossed-legged or do the "butterfly stretch") and flexion (bringing my knees to my chest is still difficult for me). But my hip PT thinks my hip joint is doing well, my remaining pain is coming from tight muscles and compensation/weakness. I am just struggling to get these tight muscles to "release". The good news is my knee pain has been better lately. I'm not sure exactly why, but the last 6 weeks I have spent a lot of time massaging my Iliotibial (IT) band and quadricep on my left side. I have also worn my SERF strap (thankfully I finally got insurance to cover it!) when walking for any length of distance. Whatever the reason is, I am thankful, though I am afraid it may come back at any time as I know I still need to strengthen my leg/glute muscles badly. Unfortunately every time I try I end up flaring my pelvic floor or another area of my pain.

One of the biggest frustrations of this last month has been my almost inability to lay on my surgical side again. It seems I have developed some thick scar tissue around to the two outermost surgical openings. I have tried lots of self massage and I also got this little gadget (pictured below) which can be found here to help with self massage, especially of my leg muscles, which I think might be helping some, but I can only tolerate laying a few minutes on my left side. Please pray that I will be able to get this worked out soon as it is already challenging because I cannot lie on my back due to sacral pain and I cannot sit for long (so I am spending a lot of time on my right side!).

I am scheduled to leave tomorrow for three days of treatment with my out of town hip and pelvic floor PT. Unfortunately we've had a lot of troubles with our van that we got used last December, when our car was totaled by another driver. We just spent $600 to put in a new air compressor, after spending $300 the week before for more repairs, but yesterday we realized the air conditioner is still not working right. It's just too hot to drive 2-3 hours without A/C right now and I need to be able to lay down in the van when traveling so as not to increase my pain. Please pray that our mechanic would be able to fix the van quickly in the morning so that we can still leave to get treatment. I am currently without a PT locally so I really need to have some PT in order to keep my pain levels a little lower. I stopped the myofascial release PT, though I might go back as nothing else locally has helped as much as that, which sadly wasn't much.

While I know I need to go have therapy, honestly I don't feel like going because I have had a headache for the last 10 days. I'm not sure what exactly has brought this on, but man do I have empathy for those who have migraines! Headaches just make me tired, irritable, and getting anything done can be a challenge. Some of you who have been around for a few years may remember I struggled with headaches back in 2010. A combination of massage, medications, new pillow, stretches, and the grace of God finally took these headaches away. Please pray that God will relieve these headaches and/or I will figure out what is causing them and how to minimize them.

Over the last few weeks I have made some drastic diet changes (more on that coming soon) to see if it helps with my pain (unfortunately currently I am in more pain than I have been in a while with these headaches!). I have also changed some supplements, but when the headaches started I immediately reverted back to my normal medications/supplements and my headache didn't start until day 12 of my dietary changes so I'm not sure that the two are related. With my new dietary changes I have had to spend a lot more time cooking and I wonder if that has something to do with the headaches. This would make sense because so much of my pain is biomechanically orientated. I have had one massage since they began, but I didn't feel any relief from that. The week before last was also a very busy week for us as my daughter had Vacation Bible School and I have not gotten as much sleep as I need lately so the headaches could be caused by a combination of things.

Some of you who follow my Facebook page may have read my status update from last weekend:

"Our "new" car we got used in December after a car accident has needed almost $1000 worth of repairs this week. Just "luck" that I was approved disability this week? I don't think so. This is God's sovereign hand at work!

Also, is it just chance that today we sold a bike rack for $40 we were never able to use due to my pain? This is God's providence working for our good and His glory!

Of course God is still sovereign when we don't get disability and we don't make extra money, but this sure is a blessing and we want to praise God for his favor! (The extra $40 will pay for a little date my husband and I already had planned - a VERY rare treat for us!)"

It's interesting how quickly things can change! That was a good day, things were "looking up" for us. We had received word that I was approved for disability, gotten some extra cash, and my husband and I were going on a date. A week later, when our car is still not working properly, my head feels like it will explode, and I might not be able to go to my out of town PT as planned I will admit the statement, "Of course God is still sovereign when we don't get disability and we don't make extra money" is not as easy to say. Sadly my response yesterday (when we realized the van air conditioning was still not working and my head was pounding after taking my daughter to a birthday party) was not one of trust in a sovereign God, but one of anger, doubt, and frustration.

The good news is God is faithful even when we are faithless (2 Timothy 2:13). Our faithlessness, as children of God - saved by the blood of Christ, cannot nullify the faithfulness of God (Romans 3:3). And even if we don't understand or want to believe it at times, God is always in complete control, working all things together for the good of those who love Him (Romans 8:28). Thanks for praying!

Lots of Prayers Needed!

Sorry for the lack of posts lately. This last month my parents have been renovating the kitchen of the house we rent from them. It should be finished in the next couple of weeks and what a blessing it will be! My daughter is finished with preschool for the summer, and so any extra energy I have has been going toward caring for my family and enjoying the warmer weather before it becomes too hot to be outside!

Tomorrow is a BIG day, though, and I sure could use some extra prayers. After 20 months of wading through the disability process and being denied twice, I will have my hearing in the morning. My attorney thinks I have a good chance of being granted disability since my pain affects my standing, walking, and most importantly sitting ability.  But I know that anything can happen and it's really in the hands of the judge who will be hearing my case. If I am not given disability benefits then there would not be any reason for me to reapply unless my condition worsens. Please pray that I will explain my pain/limitations well , that the judge will be empathetic, and that he will see how my pain prohibits me from working. Pray that we will trust God no matter what the decision is. (We will not get a response for 30-60 days).

I have continued to see myofascial release therapist for the last 3 months, but I am not seeing any real improvement. The biggest issue is that this therapist is not trained to work on the pelvic floor and without that my sitting ability is not likely to improve. I am not sure what to do honestly. I have tried almost every therapist in this area that I can find who has any experience at all in the pelvic floor. I continue to try to research and call other therapists in this area, but it seems I am out of options. It's hard to understand why God would put us in an area without knowledgeable health care providers to help me, but for some reason He has not allowed us to leave this area yet. It is extremely frustrating and discouraging and were it not for Christ I would despair (and rightfully so!). Please pray against the temptation to worry and despair. Pray that God in His timing would provide a way for me to manage my pain better or preferably that He would take it away!

I am 9 days shy of being 5 months post-op from hip surgery for FAI/labral tear. The last few weeks I have been dealing with a lot of operative side knee pain again. I have had problems with this knee on/off for several years, but especially after surgery. My PT (that I travel 2.5 hours to see every 4-6 weeks) thinks the knee pain is due to my quad and glute weakness which is causing my femur to rotate internally when walking. Also my IT band is extremely tight and overworked due to extreme weakness in my adductors/vastus medialis. Unfortunately I struggle to do very much strengthening because it increases my pelvic floor burning. Lately my knee pain has made walking and even standing painful. I've been using KT tape (which helps some), anti-inflammatories, foam rolling, warm Epsom salt baths/heat, self-massage/trigger point release, but I am still struggling. I am trying to get my insurance to cover a SERF strap, which my PT thinks may help with the hip internally rotating, but please pray that when I travel to see my therapist this week she will have some other tips to help me get this knee pain under control. Also pray that she will help me find some exercises in general that I can tolerate better in order to regain some strength.

Thank you for praying for our out of town trip back in April. It was not easy, but God gave great grace and allowed us a good visit with my husband's family. Also thank you for praying for my husband's job interview. Sadly, we are still waiting to hear whether my husband will get this promotion or not (he should finally hear this week, Lord willing), but we did learn that even if he gets this promotion the pay will only increase minimally. So he will actually work more hours for less money overall, due to changing from an hourly to a salaried position. This is of course disappointing, but we know God is in control of this as well and He knows what we need. Pray we would trust God to provide and that He would provide either through disability or a different job for my husband.

It seems the Lord has been and is continuing to teach us patience. I know I am far too often weary of having to wait, and I complain and worry about the trials we face. But I pray God will help us hold firm to Him till the end and that we would fix our eyes on Him as we wait.

3 Month Hip Surgery Update

I'm 3 months post-op from my left FAI/labral hip tear repair. I wish I had good news to report - that overall my pain levels are lower and I am functioning better - but I don't. While this last month I have become a little more mobile (than I was at 2 months) and I am able to lie on my surgical side better and getting down on the floor/squatting is a little easier. I am not noticeably better overall. I am still struggling with my range of motion (which didn't really improve from my 1 month to 2 month post-op appointment) and internal/external rotation (especially external).

My hip pain was really a minimal part of my overall pain, and I knew that going into the surgery. Yet others with similar pain and history to mine had received relief of symptoms so I was hopeful I too would gain a better quality of life.

It is still possible I could see overall relief from this surgery as the normal healing time is up to one year, but it is discouraging that I am still dealing with so much muscle dysfunction (tightness, pain, and compensation) at 3 months out. No amount of heat, massage, or therapy seems to help. My worst areas are my abdomen (my psoas and rectus abdominus muscles), my low back (quadratus lumborum muscle), and my thoracic area gets very "locked up" feeling making even standing difficult at times. My surgeon tighted the hip joint capsule during surgery due to my ligament laxity and sometimes I wonder if my increased abdominal/low back pain could be due to that.

The last 6 weeks I have been trying a new more alternative therapy locally called myofascial release. It is a gentle "hands-on" therapy which involves long stretches and releases. I do feel better after each session, but it is very short lived (30 minutes to 4 hours of a little relief) and it doesn't really address my sitting pain. So I am not sure how long to continue this therapy.

It's disappointing that I can't seem to find a way to better manage my pain and improve my quality of life, but I press on knowing I have much to live and be grateful for. Though God's ways are not my ways and I struggle to understand "why", I hold to what I know is true: God is good and He is sovereign. This is all any of us know, and it's really all we need.

I continue to appreciate your prayers:

• Today we are leaving to visit out of town family and on the way back we will see my surgeon/therapists for a follow-up. Traveling is extremely difficult for me, but God in His providence provided a mini-van for us this past December after my husband was in a car wreck that was not his fault. This allows me to lie down while traveling and my daughter can come with us since she can sit in her car seat! Please pray my pain levels will be tolerable during our time away and that my surgeon/therapists will have some insight to help me work through some of the abdominal pain especially as it really makes me feel nauseated at times and nothing seems to help relieve it.

• My husband has interviewed for a promotion with his company. If he does not get this promotion he will get demoted and his pay will decrease. Please pray that God will grant him this promotion as we could not make it financially on any less money (we already have to dip into our savings each year).

• Next month I have my disability case hearing. I have already been denied twice and this time I will appear before a judge with an attorney to plead my case. Please pray that the judge will have compassion and empathy for my situation and believe that I am truly disabled and in pain.

• Continue to pray that God would help me find a way to manage my pain (or even better that He would heal me!). Also pray that He would give us wisdom to know what to do about treatment options/therapies.

• Please pray that we would persevere and not lose heart. Pray that we would seek God even though it is discouraging, and it sometimes feels like He is not at work.

Thank you for continuing to journey with me. I am truly grateful for the prayers and support.

2 Month Post-Op Hip Surgery

I'm now a little over 2 months post-op left hip scope for FAI/labral tear. This last month has gone by quickly. I'm now off all assistive walking devices (since around week 5.5 weeks) and doing most of my "normal" limited activities. I still struggle with squatting/getting down on the floor, walking more than a couple of blocks, standing for long periods, laying on my operative side (though this is slowly improving), and internal/external hip rotation. There are still occasional movements that cause me to gasp in pain, but hopefully with time and therapy these will get better.

Last week I finished an intense week of therapy out of town again. I haven't felt as much improvement as I usually do and I think that is likely due to the fact that I overloaded myself while I was there - seeing two doctors, driving back and forth almost 30 minutes to therapy (which is extremely hard for me) with sometimes multiple therapy sessions in a day - and my therapy was a little more aggressive. Sadly, I continue to have all my pre-op pain in addition to some new pain brought on from the surgery. I am trying to be patient and am praying that with time some of my old pain, especially the sitting pain, will diminish, but it seems like most of the people I have known who have had relief of their pelvic floor pain with hip surgery saw at least some improvement in pain within the first couple of months.

This past month my hip rehab has been much slower. I had a stomach virus which knocked me out for over a week and I continue to struggle to do therapy much outside of the pool without an increase in pain. I continue to have A LOT of muscle dysfunction and pain. My abdomen literally has knots in the muscles and I often feel crampy. I've tried self massage, warm baths, professional massage/manual therapy, moist heat, TENS, and stretches but nothing seems to help much. The more I am upright trying to walk around and do light work around the house and sit for short periods the more my thoracic area and lower lumbar area on the operative side screams at me. It's most likely my psoas and quadratus lumborum that are extremely spasmed from all my glute and hip weakness and sacroiliac joint instability. It literally feels like a stabbing pain around T12 (right about where my ribcage ends). I had these pains pre-op, but they are definitely intensified post-op and it is frustrating because I had them better managed I feel like back before Christmas. The hip PT feels like most of my pain is muscle related and that I have better movement through my hip, but that my muscle tightness and pain are limiting me.

It's discouraging and not what I hoped for, but I'm thankful for what I can do and am continuing to press on by the grace of God.

Praises:

• I no longer have any more tingling in my foot/leg than I did pre-op, though I do continue to deal with symptoms of central nervous system sensitization, a pain syndrome causing hypersensitivity and allodynia (painful responses from non-painful stimuli).

• My knee pain is much more tolerable. I still have a lot of weakness, but my knee is not subluxing or causing me to scream out in pain when I kneel down.

• The areas of numbness on my thigh seem to be getting smaller though I do have some scar tissue around my surgical sites which are creating pain when trying to lay on my left side.

Prayer Requests:

• I have found a local therapist which does myofascial release, a more alternative therapy. Since I have not had any real success with my other local options please pray this therapy might help me work through some of my post-op muscle pain and help me manage my overall pain better/improve my quality of life.

• If it is not God's will for me to get better,  please pray that I would not continue to progressively get worse. Ultimately I want to get stronger, of course, but it would be wonderful to just get to a place where I can function decently (care for my family and attend occasional social functions and church) under my limitations and I am not constantly flaring.

•  Pray that I would be able to get this muscle pain under better control so I can tolerate home therapy better.

• Continue to pray that God would provide for our needs - spiritually, physically, and financially - and that we will trust Him no matter the answer to our prayers.

Thank you for your continued prayers and support.

One Month Post Op Update

Well my weekly post-op updates didn't quite go as planned, sorry about that! Thank you to those who have been praying (prayer requests at the end of this post).

Tomorrow I will be 5 weeks post-op. Recovery is slow as I knew it would be, and there have been lots of ups and downs. I just got back from 4 days (5 sessions) with my wonderful pelvic floor PT and hip PT out of town. I feel so much better when seeing them, but it is very disheartening to return home knowing that I will go another 4 weeks before I get the PT I need. I just feel like if I had access to consistent good therapy that I would be able to manage my pain much better, but apparently that is not God's plan for us right now. 

Here's a little recap of the last few weeks:

Day 16-21 post op: I experienced a big flare up in my pelvic floor pain/burning. I couldn't even sit for 5 minutes without being on fire! I feel like it was due to being too aggressive with my glute sets and bridges while trying to strengthen my hip. I backed off these exercises for a while and it finally calmed down some thankfully. This is frustrating though because I need to strengthen, but I know I am just going to have to be patient. At three weeks post op I went to see my hip PT out of town. I saw a major improvement in post-op hip related pain thanks to lots of manual therapy. My quad was really angry prior to seeing the PT. She didn't add any new exercises since I was still struggling with an increase in pelvic floor pain, and encouraged me to get in the warm water pool as much as possible.

Week 3-4 post op: I got a massage (right now I am trying to do bi-weekly massages) - this helps with all my overall muscle pain due to the dysfunction and compensation. I also went to the warm water pool 4 times this week without any real flare-up in pain. I tolerated my hip exercises much better in the water than I did on dry land.

Week 4-5 post op: I began to start taking steps around the house without my crutches or with just one crutch. My hip PT didn't really want me to use only one crutch due to fear of worsening my muscle compensation so she suggested I use a cane. I don't feel like the cane really helps that much so unless I am walking outside my house, or unless it is the end of the day, when I often begin to feel like I can't stand up on my own anymore, I've just been walking without an assistive device. I'm glad to be walking some again, but I am experiencing a good bit of muscle pain. A lot the muscles that support my pelvis are so tight they feel like bricks. The muscles that are the worst are my psoas, rectus abdominus, quadratus lumborum, and the erector spinae (which are more superficial - to the surface of the back - than the quadratus lumborum and psoas).

Image source



 

Image Source

I've had problems with these muscles for a long time now, but my psoas and rectus abdominus got so bad this past week that it felt difficult to stand up straight or even eat as my abdomen was so swollen/irritated. I'm not sure what exactly caused this, but I think that maybe I was overly aggressive trying to tighten my transverse abdominus (TA), to support my core, while trying to do my pool exercises.  Since I am very weak, due to years of dysfunction and worsened due to recent surgery, it is easy to recruit other muscles . My pelvic floor PT said that you only need to contract the TA to about 30% of maximum contraction. This is much easier for me to do lying down than standing up in a pool though!

I've also been having some significant knee pain. Getting down on the ground to play with my daughter is still difficult and the knee is also painful when walking. My hip PT gave me a SERF strap to borrow to see if it helps with the knee pain. So far it has I think, but I hope the knee pain will lessen once I build back some quad strength.


Praises:

• My circulation issues seem to be getting better. I still have some tingling in my foot and after standing for a long time occasionally my surgical side foot is more red than the other. I saw the surgeon for my 1  month follow-up and he and the PT are hopeful that with time and full-weightbearing this with go away. Although they have bought mentioned Complex Regional Pain Sydrome as a possibility. Continue to pray that this will resolve at least to my pre-op normal.

• My bandiad rash finally went away!!

• Praise God I have access to a warm water pool (for a price we can afford!) and that it provides reduced pain levels, even if for only a few minutes.

• Praise God I am regaining the ability to walk around the house more. Please pray that this continues and that the knee pain will go away as I gain more strength. 

Prayer Requests:

• That I will be able to get the muscular tightness and pain under control so I can continue to strengthen. The main goal of this surgery was to regain strength, please pray that in time I will be able to do this.

• Pray that God will provide a way for us to get good physical therapy more consistently. The only way we see this happening is if we move. My husband continues to look for jobs in larger cities where I would have access to the specific medical care I need. If it is not God's will for us to move, please pray that He will help me learn how to manage my pain with the resources I have locally.

• I continue to have some numbness on my upper and outer thigh either from surgery or from the nerve blocks I received in recovery. These areas are very sensitive if I rub up against them or try to lay on my left side. Pray this will decrease in time (sooner rather than later!).

• Pray that we would rejoice always that I have a living hope and a future in Jesus! This is a daily battle as chronic pain wages heavily on us.

I was reading in a devotional Jesus Calling by Sarah Young that a sweet new friend with chronic pain gave me. (I do not necessarily advocate for reading this devotional as I feel the author's take on "hearing from God" and writing in the first person as Jesus is a bit presumptuous, but as with any devotional book one must take the author's writing as just that - the author's writing. So if you read "Jesus Calling" take Mrs. Young's writings as a grain of salt and be sure the majority of your spiritual food is coming from God's true word - The Bible.) Today's reading was so very appropriate as I am tempted to worry about the future and how I will ever get my crazy tight muscles under control (and especially without good PT!). Here is a portion of today's reading:

I am your Strength and Shield. I plan out each day and have it ready for you, long before you arise from bed. I also provide the strength you need each step of the way. Instead of assessing your energy level and wondering about what's on the road ahead, concentrate on staying in touch with Me.... Refuse to waste energy worrying, and you will have strength to spare. (Psalm 28:7, Matthew 6:34, Psalm 56:3-4) 

Labral Hip Tear/FAI Surgery Recovery Checklist

I thought I would compile a list of things I have found helpful during my recovery from arthroscopic hip surgery for labral tear/femoroacetabular impingement. Of course, remember that each surgeon varies on their restrictions and protocols post-op, so be sure to talk to your physical therapist or orthopedic surgeon before buying/using the items I suggest. I have been restricted to crutches  and no flexion of the hip past 90 degrees for the first 4 weeks and no external rotation for the first 6 weeks. I got several ideas from this great blog which highlights another lady's journey with FAI.

Must Haves (in my opinion):

• Band-Aids, peroxide, alcohol - I had 5 small incisions that had to be cleaned daily for the first 7-10 days with 1/2 peroxide and 1/2 water and then covered with a Band-Aid. I used alcohol wipes to get all the markings from surgery (my surgeon put his initials on my thigh with a sharpie!) and all the adhesive from the bandages.
• shower chair - I was blessed to borrow this from my grandmother. For those with pelvic floor pain, I sit on a toilet ring vinyl cushion while sitting in the shower. It's one of the many cushions in my stash that haven't helped. It doesn't take a lot of pressure off, but it is better than nothing for me.

• long handled loofa or sponge -  if you can't flex your hip past 90 degrees, washing your legs/feet will be difficult without this
• something to tape your razor on to shave your legs (if you are female :)) - You will not be able to bend at the waist to reach and shave your legs. I used clear packing tape to tape my razor to the end of my long handled loofa. I saw somewhere an idea of taping a plastic ruler to the razor. I've had to re-tape only once in almost 4 weeks so far.
• crutches - Initially I purchased Millennial Crutches, which are supposed to be more ergonomical than the standard crutches as I was concerned about using crutches due to my poor upper body strength and a history of underarm hypersensitivity (cause unknown, but thankfully it isn't a problem as of now). We purchased the millennial crutches from a discount online site and received defective crutches just a couple of days before my surgery, so we took the standard crutches that insurance covers from the surgical center. (I did not care for the spring loaded Millennial Cruthches by the way). I've done fine with the regular crutches though other than getting blisters on my hands. I highly recommend padding. I really like these Crutcheze pads that I ordered (on Clearance!).

• Water Bottle Holder - It's important to drink A LOT of water while recovering from surgery. And when you are using two crutches it makes carrying anything almost impossible. It's really frustrating to be dependent on others for almost everything. So if you can at least go to the fridge and get yourself a water bottle that helps!  Crutcheze makes a special bag to hold a water bottle and other small items, but my great aunt let me borrow a cheap water bottle holder that clips onto some string my husband put on my crutches. Another option would be a water bottle with a handle on it like this one that you could put your finger through while using the crutches
• Backpack/backpack purse - As I said you cannot carrying much with two crutches so a backpack is really a must, especially when trying to get out of the house for PT appointment, etc.
• Grabber: I don't know about you, but I drop stuff A LOT (I think some of that is due to some of the medication I take). And of course when you can't bend over or squat down to get something, it seems you drop things even more!! I borrowed this from my grandparents, but having a couple around the house would be helpful.

Device to help put on your socks - Putting on socks/pants/shoes is really difficult when you can't flex your hip past 90 degrees. My grandmother let me borrow this device that was given to my grandfather after he had a total hip replacement. It allows you to put on your sock without bending your knee more than 90 degrees. Slip on shoes are really helpful as well. I don't get out of the house (or my PJs) that often, but it is nice to not have to ask my husband to constantly put on my socks and shoes, though those first few days I did need help with my pants a lot. They make dressing hooks like this one but I just used my grabber to help pull up my pants. I only wear stretch yoga type pants anyways.

 

• Toilet Riser: Not everyone that has a hip scope recommends a toilet riser, but if you have muscle atrophy and weakness like I do from years of chronic pain, then I highly recommend one of these. The first two days post-op I had to use a bedside commode as I explained previously, but my recovery experience is not the norm, I don't think. We bought this toilet riser for a really good deal and I'm glad we did. The handles have come in extra handy.  

Image found here

• Ice packs - if you don't use a Game Ready icing system you will need ice packs - though I only used ice for about the first 4 days as I explained in this post. This is my favorite brand of ice pack and I love this wrap. I use it around my hips/sacrum/knee, you name it. In my opinion, even if you do ice a lot, the Game Ready isn't necessary because you can buy A LOT of ice packs for $300 (the price I was given to rent the Game Ready for 2 weeks). The Game Ready was nice the first 2 nights as it ran continuously (on 30 mins/off 30 mins) but it does eat through the ice quickly.

Image Source

Also Helpful:

• TENS unit - this is placed on the muscles, creates a vibrating sensation, and helps distract the brain from pain. It helped me not have to use as much pain medication some days.
• Theracane - I have used this for a couple of years now to help do self-massage and loosen tight muscles. There is a lot of muscle dysfunction for most with FAI/labral tears and this surgery creates more, especially in the quad area. Add on crutches and your muscles are a mess!
• Body Pillow -I used this as a bolster to keep from rolling over on my surgical side while sleeping. I have a snoogle pillow that I bought when I was pregnant and having low back pain. Love this pillow! I put it up between my legs to keep from externally rotating my hip at night (you could easily just use regular pillows though). I also like the body pillow because it creates a barrier so my husband can't roll over on me during the night :)
• Electric Throw/Blanket- If you have your surgery in the winter months or rent a Game Ready this will come in handy as icing sure makes me cold. I'm super cold all the time anyway!

• Microwavable Booties - speaking of being cold all the time, my feet are super cold (they've been like this ever since the burning in my feet started 2.5 years ago, don't really know the exact cause). I used some birthday money and got these booties and I LOVE them! Not a bad deal either.

• Freezer Meals- Before surgery my mom and I cooked up several meals to store in the freezer. You will not feel like being on your feet long enough to cook a meal for sometime. I am blessed and have had a lot of meals from family and friends brought to us as well. But I also have enough meals in my freezer to go a couple of months without cooking, which is a blessing so I can focus on recovering!

When people see me on crutches and ask me "what happened" and I tell them that I had hip surgery, their eyebrows raise. But when I tell them it was arthroscopic, they say "Oh, ok" (like that's not too big of a deal). True, an arthroscopic surgery is much less invasive than an open total hip replacement, but it is still a big surgery with a lengthy recovery. A surgery involving the hip is complicated by the fact that we never truly rest our hips because we use them for standing, sitting, even rolling over while lying down. I'm not sure how people make it through this surgery recovery without help.  My husband has basically kept the house going and we've relied a lot on family/friends. (I do have a 3.5 year old daughter which makes things a little more difficult. I might write another post on how to recover from this surgery with young children.) I don't say this to scare anyone out of this surgery, but just to help prepare you so you will not be alarmed post op!

Well, I think that covers it. Thanks to the two of you who actually read this far :) Hopefully it helps someone.

**Some of you have left comments/sent emails after reading this asking how I am doing now. Please check out my latest updates here for more info.**

2 Week Post Op FAI/Labral Repair Update

I'm finally back after my left hip arthroscopy to correct my femoroacetabular impingement (FAI) and labral tear. (For pictures and a more thorough explanation of labral hip tears/FAI click here)  I have had some bad days, but in some ways I am doing better than I thought I might be at this point.

My surgery was delayed 2 hours and I was the last case of the night at the outpatient surgery center. When I met with my surgeon pre op I was under the impression that I would have the opportunity to pick from a few different several different nerve blocks pre op to help with post surgical pain. But when the anesthesiologist came in to talk to me he said they only do two types of blocks - femoral nerve block and a lateral femoral cutaneous nerve (LFCN) block in recovery if post op pain is uncontrolled. He warned me that these blocks would not help with "bone" pain - pain coming from inside the hip joint only with surrounding soft tissue pain.

My recovery experience was horrible. I don't remember a lot because apparently my pain was uncontrolled and they had to give me a lot of medication. The anesthesiologist also gave me  a femoral and LFCN block, but I remember feeling a lot of pain like I had never felt before and since the block didn't help much other than to numb my leg making walking/moving difficult, i assume my pain was coming from inside the joint. My nurse was not the nicest. I was extremely hoarse from the intubation tube (this took a good week to get better) and she just sat at the end of my bed and said "huh" over and over. They didn't let my husband see me for a long time and I remember at one point waking up and seeing another patient and their spouse looking at me and the man said, "you're in a lot of pain, aren't you?" Yes, I was. When they finally did let my husband back he told the nurse I was in a lot of pain (I guess I told him I was or he saw it in my face - thankfully I don't remember this experience much) and the nurse said, "well I've already given her enough medicine to knock out a cow!" This nurse obviously wanted to get out of there. I don't blame her. It was 9pm on a Friday night. I never had gone to the bathroom post op so she rushed me into the bathroom and gave me about two minutes. When I hadn't gone yet she said, "well if you haven't gone in 6 hours just call your doctor." I told my husband to ask for her name. Needless  to say I have reported my experience. My level of consciousness and pain level was too poor to be discharged. I should have been admitted to the hospital overnight.

Thankfully we only had a 15 minute drive to my grandmother's house. My husband was able to use her wheelchair to get me into the house and I slept on her couch for the next two nights. The first night I had to urinate about every 1-2 hours as I had such bad urinary retention from the anesthesia I guess. I was itching horribly, and  I would shake like crazy every time I had to get up to go to the bedside commode (it's a good thing I was staying at my grandmother's where I had access to these things!). Benedryl and pain meds helped me get through the night. We also rented a ice system machine called a "Game Ready" (more about this later) that cycled on/off every 30 minutes. My poor husband "slept" in the recliner between my bathroom calls and filling up the Game ready.

We met with the doctor and his nurse the next morning (he came in on Saturday to see his out of town patients). I told them about my experience and that my pain still was not controlled well. They gave me a few new prescriptions, took off my bandage and the surgeon explained what went on during the surgery.

I had an anterior superior labral tear which was repaired with two anchors as well as some posterior labral fraying that was smoothed down.

left anterior labral tear

 

labral tear repaired

The most common cause of a labral tear is femoroacetabular impingement. I had a small CAM deformity on at the head/neck junction of the femur which was shaved down. One of my biggest pre-op concerns was finding out why I had a labral tear since groin/hip pain was only one of my many symptoms. When I asked the surgeon this pre-op he felt like it was likely due to the "way my hips are made" (i.e. FAI). I was concerned, however, after reading this article that the cause might be ligament laxity (since some PTs have felt I have some widespread joint laxity) or due to biomechanical issues and muscle imbalances including lower crossed syndrome (which I have). Lower crossed syndrome often can cause an anterior tilt of the pelvis (which I have) causing increased weight bearing on the anterior labrum and subsequent tearing. When I saw the surgeon the day after my surgery I asked him if he thought my CAM was enough to have caused my labral tears and he said, "no". I want to talk to him more about this at my one month follow up because I am concerned that if the cause of the labral tear is not fixed then there is a greater likelihood of re-tearing. I sure hope this surgery wasn't a waste. Due to my sacroiliac joint dysfunction and pelvic floor pain correcting the lower crossed syndrome has become almost impossible, though my goal with this surgery was to hopefully be able to regain muscle strength in my left glute and leg. Only time will tell if this is possible and if the surgery was beneficial.

 left CAM deformity

CAM deformity shaved

In addition to the labral repair and CAM shaving the surgeon also found that my ligament terres was enlarged. He was able to decompress this with heat and there was also a good bit of inflammation in the pulvinar tissue which lines the acetabulum. The fact that my ligament was so irritated and enlarged concerns me again that the cause of my labral tear might be more biomechanical or that I could have an underlying connective tissue disorder, which is something I have thought for some time now and may be something I investigate further in the future. In order to perform the surgery the joint capsule has to be opened up. Sometimes they leave the capsule "open" after arthroscopic surgery, but thankfully my surgeon closed the joint capsule since I have some ligament laxity .

Enlarged ligament terres

Inflammation of pulvinar tissue of the acetabulum

 The first three or four days of my recovery were pretty rough. We unfortunately chose to travel home on post-op day 2 and my anesthesia was wearing off so the 2.5 hour trip home was difficult. The high doses of narcotics made me extremely emotional/panicky/depressed and they didn't help the pain that much. Ironically once I stopped taking the narcotics and stopped icing I actually felt better. Most people really like the Game Ready icing system, but for me the ice seemed to make my circulation and pain worse (more on this below). A low dose muscle relaxant at night has actually been more beneficial for me and I am taking higher dose anti-inflammatories as prescribed for the first 3 weeks post op. I will be on crutches with 50% weight bearing for at least the first 4 weeks and I cannot flex my leg past 90 degrees or externally rotate my leg at the hip.

At 2 weeks the surgical pain is tolerable unless I am up too long or doing PT exercises.  I drove today for the first time and am able to care for my daughter for very short periods of time. The biggest struggle is that I cannot carry anything with my crutches, bend down, or even reheat food for myself. I had 5 small incisions and got my stitches out on day 10.  Everything seems to be healing nicely except I did develop an allergic reaction it seems to the band aids I was using as I have sensitive skin. I am hoping this goes away soon and then I look forward to hopefully getting in the warm water pool to do some therapy exercises. This is one place where I usually experience less pain. I got a massage on day 10 and tolerated it well, though my therapist was more gentle than normal and stayed away from my left hip. The nerve blocks I had post op took about 7-10 days to resolve. I still have a little big of abnormal sensation on my upper thigh, but nothing I couldn't live with if it doesn't fully resolve. The first three days post op I couldn't move my leg and I felt like I would never walk again, but thankfully my range of motion is improving daily.

My hip at 2 weeks post op with band aid rash

Unfortunately my chronic pelvic, sacral, low back, pain and leg burning has remained the same. I am very thankful I am not any worse though. My biggest concern is that my operative leg has appeared darker in color at times than my right leg. My feet have burned ever since June 2010, but I have noticed that they are more flared up and my left foot sometimes feels like it is asleep/tingling. The doctor's nurse said this could be due to the fact that I am not bearing enough weight or it could be complex regional pain syndrome. Due to my previous "diagnosis" of central sensitization I have been concerned about CRPS for some time. But my pain in my operative leg is not grossly abnormal so I am praying that with time and therapy my leg/feet circulation and burning will get better.

It takes professional athletes 4-6 months to recovery from this surgery and return to their pre-surgery athletic level, so due to my complex and chronic pain I know to expect that long and up to a year (according to my surgeon) to see full healing. Already after only laying around for 2 weeks I notice more muscle atrophy so it is going to take a lot of work to rebuild my strength. Patience is key, as I knew it would be, and I am still very early in my recovery.

Praises:

• I am able to use normal crutches without too much difficulty or increase in any previous chest/underarm pain that I've had in the past!
• My pudendal neuralgia/sacral pain doesn't seem to have been worsened because of the surgery (i.e. I can still sit about the same amount of time).
• My mother did well with her surgery and seems to be healing nicely. Our extended family and church has been a great support to us.
• My GI issues have been much more tolerable! Please pray this continues.

Prayer Requests:

• That my circulation will return to my normal pre-surgery level soon and that the burning in my feet and legs will lessen.
• Pray that my rash goes away soon so I will be able to do aquatherapy
• Patience and peace - that I will trust God is in control and have joy in Him even when the days are difficult
• That I will regain the ability to walk and stand without difficulty (this is especially important since I am unable to sit for long periods of time).
• That some of my chronic pain might eventually resolve with the appropriate therapy and pray that I will be able to get good quality PT as often as possible (I have to travel for this which is difficult for our whole family).
• Continue to pray that God would one day allow my husband to get a job in a bigger city where I could have better access to pain management and therapy treatments.
• Continue to pray for strength for my husband as he cares for us and keeps the home running. He is such a gift from God!

Whew! Sorry for the overdue update. Hope to get back to more regular blogging in the days to come. Thanks for praying and caring.

An Overdo Update: Upcoming Hip Surgery!

I realize I've been a little quiet the last few weeks, but most of my better days have been spent preparing for Christmas, enjoying time with my family, and preparing for upcoming hip surgery. After a lot of thought, research, and prayer my husband and I feel it is wisest to pursue arthroscopic hip surgery to correct a left labral hip tear and femoroacetabular impingement. (I have bilateral hip pathology, but both of my PTs, massage therapist, and I agree it is wiser to do my left side first as I have the most dysfunction/atrophy on that side).

It almost seems surreal that in 2 days I will start the long recovery process (up to one year total time). I think anytime one undergoes elective surgery there are always doubts about whether it is the right decision, but especially when you have tried multiple treatments (and failed) and when you have a very complex case like I have. Sure, I can't do what a normal 30 year old can do by any means, but I am able to do some  things, so do I want to risk getting worse? Maybe this is just God's will for me and I need to accept my disabilities and try to manage the pain as best I can? What if my hips aren't really causing as much of my pain as I think/hope? And the list goes on and on.

I have always been an indecisive person, but at the same time growing up I was always a risk taker (until I had what felt like a near death experience white water rafting the Nile River!). The truth is I don't know what the outcome of surgery will be - no one ever does. But we have prayed for God to give us wisdom and at this time we feel this surgery is a risk worth taking. Even if I do not have any pain relief overall, if I am able to preserve my hips and prevent the need for a total hip replacement in the future (arthritis is often the end result for people with my condition, especially at such a young age, and it is hereditary as my father has this same condition - though he did not have it corrected and is currently biding his time before a replacement will be necessary ) then it would be worth it.

I really have accepted the fact that I will most likely have chronic pain, but I am still praying that God would give me a better quality of life/management of my pain. Even for my pain levels to stabilize would be wonderful because I seem to continue to get more debilitated year by year as I lose more muscle and my pain becomes more widespread.

We definitely need your prayers as we begin this new journey. Please pray:

• For post-op pain control. This is my number one concern as I'm not sure how much of my pain is coming from the central nervous system sensitization that I have spoken of before. Unfortunately the infusions I had in November did not provide any relief and only increased my pain. I have considered traveling to see a doctor who specializes in this type of infusion, but from my research it doesn't seem like these drugs help people such as myself with biomechanical causes of pain that have not first been corrected (and I really believe my pelvic pain ultimately stemmed from a biomechanical cause - most likely bad hips or sacroiliac joint dysfunction or both). I am very concerned about the inability to get up and move around much at first as lying in bed often seems to increase my pain and I cannot lie comfortably on my back - this means that for several weeks the only position to rest may be on my right side. Pray that the anesthesiologist & surgeon will have wisdom to know how to best control my pain during and after surgery.

• That I will be able to get the PT post-op that I need. My experienced PTs are 2.5 hrs away and I will only be able to see them occasionally. Pray that my local PT will be able to help me and that in combination with warm water therapy/massage/home exercises will suffice and help me get to a better quality of life.

• My mom has to have an unexpected surgery one week after my surgery. She will have restrictions for several weeks so caring for my 3 year old daughter will be a little tricky as I will be on crutches for 2 months or so and it will be probably a good 4-6 months before I start to feel some relief. We have a lot of extended family help and church support, but pray for my daughter (and husband/father) during the first couple of months as life will be pretty tough for us all. Pray for my mother's surgery and recovery as well.

• Pray that I will not get worse from this surgery and that there will be no complications. Pray that I will be patient as this recovery takes a long time (especially for someone with very complex chronic pain like myself) and that I will fight against my ever-present temptation to be negative.

• Continue to pray for my GI issues. I had an upper endoscopy 3 weeks ago that was normal (showing mild/moderate gastritis). I've continued medication to help with reflux and have been trying to modify my diet some. My symptoms are a little better than they were 2 months ago, but I am still struggling with burping, especially with drinking. My GI doctor thinks this may be more of a neuromuscular esophageal spasm, but unfortunately there are not many treatment options for that. I do wonder if it is just another part of the central sensitization, but I pray it is not. Please pray that I will be able to drink enough post-op to help with healing and that my GI issues might go away on their own as quickly as they came.

• Pray that God will keep me healthy going into the surgery as I am pretty tired from trying to prepare for and celebrate Christmas and get things ready around my home for surgery. Pray that God will calm my fears as well.

• Pray for peace and that no matter the what happens we will continue to trust in God - not for what He can do for us, but in who He is! Pray we would seek Him even more in the coming days and weeks.

I will try to update weekly if I can for at least the first couple of months post-op. Please let me know how I can be praying for you. I will have lots of time on my hands while recovering and the more I can take my thoughts and prayers off myself the better! Feel free to email me your requests at purposeofpain (at) gmail (dot) com.

Thank you for faithfully reading my blog and for praying. May we take hope in our Savior who was born on Christmas Day knowing that He holds our future!

New Cause of Pain after 4 Years: My Hips?

Sorry I've been a little more quiet lately. This past week I've been struggling with a stomach virus that's been lingering leaving nausea and stomach cramping as my companion. Actually, I'm not sure if it is related to the virus, or the fact that I've had to increase some medication due to burning in my legs which is relatively new. I've been struggling to use the computer for long periods to type because I have to lie down and I cannot stand the laptop on my legs. Lying down is the only way I usually get any relief of my pelvic pain, but now even that has become painful as it hurts when my legs touch each other while lying on my side and I cannot lie on my back (due to my sacral pain). It's been a discouraging week to say the least.

I've been struggling with burning in my groin and upper quadriceps off and on ever since I tried the intense alternative treatment back in May, but this burning throughout my legs and pain when lying down is pretty debilitating. It could be due to muscle tightness caused by compensation from all my pelvic dysfunction, but I feel like it's probably due to central sensitization (this is a link to a short video clip explaining what happens in central sensitization) unfortunately as pain medication doesn't even touch the pain. Next month I am going to try some drug infusions to hopefully help calm down my central nervous system and get the pain under better control.

Please pray that my insurance company will pay for these infusions. My doctor has submitted a letter of medical necessity and I am waiting to hear back from them. Please pray that the infusions will work to help manage my pain better and the side effects will be tolerable. If it does help, this is something I can do on a regular basis to manage my pain. Praise God I found a local pain doctor willing to try this!

Thankfully my doctor is willing to give us a "deal" (though still not cheap) so we feel like we need to go ahead and try the infusions as my pain is just becoming worse and worse. We will battle the insurance company after the infusions if we have to. I am concerned because the dosage this doctor is planning to give me is small and the infusions will only be for 3 days (2 hours each day) so this may not be enough to tell if the medications will help me. But it is the best option I have at this point without traveling across the country to a specialist who deals specifically with this type of pain syndrome.

Three weeks ago we visited a hip specialist and I had an MRI of my left hip (where most of my pelvic floor/sacral pain is). Interestingly they found some damage to my hip - a labral tear and ischiofemoral impingement. I was surprised to say the least, after 4 years of going to doctors and never finding anything concrete on scans. What does this mean? Was this the actual cause of my pain to begin with? I don't know, but it's possible. There is a study (read abstract on page 29 of 32) being done out of New York that suggests a correlation between labral hip tears and pelvic floor pain. However, my case is complicated due to the central sensitization and while arthroscopic surgery can be done to correct the labral tear it is possible that even with surgery my pain could become worse if my central nervous system is driving the pain. It's also important to know the cause of the labral tear, which mine seems to be congenital according to the specialist, but I also have a degree of hypermobility in my joints and this could also lead to a poor surgical outcome. I plan to look into this more in the coming months as well.

I did have a hip injection that relieved my hip pain (which is minimal honestly compared to everything else) for several hours. (I have wondered a little if the hip injection is what set off the burning in my legs, but the injection was only in one hip and my pain is bilateral and the burning didn't start until about 3 days after the injection - but then again anything is possible with central sensitization it seems!) I feel like it is possible that the hip damage has caused all the muscle dysfunction and nerve irritation/pudendal neuralgia in my pelvis and that if the hip was repaired and I had consistent good physical therapy (which is a problem where I live) then over time some of the other pelvic pain might resolve. Of course until I get some of the burning in my legs calmed down I do not know if I feel comfortable pursuing a surgery.

We are traveling this week to see the hip specialist again and I will be getting an MRI of my right hip (I actually have more true hip pain in my right hip) as the specialist thinks I have a labral tear in my right hip as well. I have a lot of questions to ask her and will see their PT as well as my pelvic floor PT. Pray that God will give us wisdom as we seek answers to these questions.

We continue to need prayer that our hope would be in God, especially  for me in these hard days, and that I would call out to Him for grace to sustain me in my physical weakness. And most importantly that we would truly trust Him.

And of course we covet your prayers for healing and if not healing then better days and a better understanding of what is causing my pain and the ability to get treatment to help me.

Recently a Facebook "fan" recommended a sermon to me by Pastor Timothy Keller entitled "Questions of Suffering" that is very convicting. He talks about the "Why?" question of suffering saying that we must:

• Avoid the pat answers of "why do we suffer"
• Embrace living without an answer to "why am I suffering"
• Anticipate the final answer

Listen to it here and be encouraged!