Hello,

First let me say that I'm sorry to see so many suffers here, it breaks my heart to see so many in pain.

I could use some thoughts or advice from those that are familiar with this dreadful disease.

I have yet to be officially diagnosed but here's a little background on my situation:

About 4 years ago, I had a really bad year filled with multiple diverticulitis attacks and a bout of pneumonia that left me bedridden for many months during that year. I had developed a lot of global disuse atrophy.

As that year ended, I had a colonoscopy and endoscopy which were both clear. Being out of shape for so long, I began to becoming active again, likely "too much too soon."

I took over all of my daily household chores again, running up and down the stairs, taking my dogs for walks, helping my elderly mother and stretching my body out like a mad woman. I sat on my heels in the plantarflexed position for hours, cleaning my attic for about a week, stretching out my tight calves multiple times a day and doing eccentric heel drops multiple times a day. (which I've never done before)

Then I began talking nightly walks, about a quarter mile a night. I should've realized that I'm not 20 anymore and took all of this a bit slower but felt the more that I did, the more I'd build my muscles and overall health up.

One night, a few days into the walking program, I came home with pain in my ankles, hips and lumbar regions, bilaterally. I thought it was odd, went to bed and woke up with no pain.

Well, ankle pain began on the left side of my body within a week. Everyone that I had seen back then (this was May of 2017) said that I likely had sprained my ankle and gave me boots, wraps, etc. I was also fitted for orthotics since I was told that I was a pronator. Less than 2 weeks later, my opposite ankle began to hurt which I thought was odd. (I know I didn't sprain my ankle on this walk)

I had multiple MRI's, ultrasounds and MRI's of my feet and was told that everything looked fine other than a touch of peroneal and posterior tibial tendonitis. I was told to rest once again.

This was all within the first 3 months. My disuse atrophy quickly returned that I had worked so hard to rid myself of.

I should also add that I had extreme tightness of my gastroc/soleus complex at the time and had to have my husband massage my legs deeply to get the knots out. He did this daily, still does with a very deep tissue massage that feels good) In hindsight, due to all of the bed rest, my muscles and tendons likely shortened and I developed equinus. (Lack of ankle dorsiflexion)

That year was rather tough, as I couldn't ambulate stairs well without pain, squat or be weight bearing much. I could physically do it, but received a delayed onset of muscular type pain that would have me in bed for days, trying to recover from. My doctors that I was seeing at the time told me to stop trying to do stairs, squats, etc. because due to the equinus, I could easily rupture my achilles, so I stopped.

As the year passed, I also reached out and saw at least 80 doctors after not seeing any change in symptoms. (Orthopedics, Foot and Ankle, Podiatry, Vascular, Rheumatology, Spinal and Neuromuscular Surgeons, basically visits with every specialty on multiple occasions) I've also had much in the way of blood work, MRI's from head to toe, EMG's and many more tests, which were all negative.

In 2018, I saw a CRPS specialist that was a very kind doctor who was going to do sympathetic blocks on me, advised by a Neurologist to at the very least offer me some pain relief, break the pain cycle and to use his methods of ruling out RSDS/CRPS. He examined me thoroughly and didn't feel that I fit the Budapest Criteria for RSDS/CRPS. Instead, he suggested that I partake in a physical therapy program directed for those with this disease. He felt that years of disuse atrophy were causing my pain and problems, as I had been in bed for years, only walking about 30 minutes a day due to gait issues and horribly tight calf muscles. He explained to me that when you atrophy this badly, your muscles and tendons all shorten and tighten and every time you go to use them, the strain of the muscles and tendons pulling on the feet will indeed cause this type of pain. He essentially felt that a RSDS/CRPS program would help a person with severe disuse atrophy.

That didn't last long, they were quite rough and brutal with me and jerking my limbs around and yelling at me to stretch my gastrocs as hard as I could in aqua therapy, left me in tears after each visit and recovery (back to the normal amount of pain) took days. I tried this on 5 or 6 occasions and this program was supposedly geared for those that had the disease. I wondered, how could people with this disease go through a program like this? (It wasn't a RSDS/CRPS related program in my opinion, one out the local hospital)

I went through all of that for 3 years and still have no answers.

At 3 years, I'm no better and am looking for answers and most throw their arms up into the air. The majority of doctors that I've seen have said this isn't RSDS/CRPS from very reputable hospital systems in my area but a major disuse atrophy and foot/ankle tendon issue. My hips and back have been bothering me, likely due to my unnatural gait or from laying too much.

I recently saw another podiatrist who is going to be making me another pair of orthotics to try, this will be my 10th pair, at least. I'm still laying in bed 3 years later, only walking about 30 minutes a day with my husband assisting me with bathing and washing my hair and with the basics. Oddly enough, washing my hair in the sink is miserable. He has to stand behind me rubbing the backs of my calves so hard because they tighten terribly.

As for the symptoms that I've had since this began. I've had nerve hypersensitivity in my feet. For instance, taking my shoes off and on multiple times causes nervy-type pain. I was diagnosed with Benign Fasciculation Syndrome over 5 years ago which comes with twitching, fasciculations and cramping so I don't know how much of that plays into this.

My feet are often cold with my toes a reddish/bluish color but I've been told by multiple doctors (Neurology and Vascular) that this is likely due to reduced blood flow to my feet since I'm horribly inactive. I've also been told that since my calves are in such a shortened and tightened state due to disuse that my valves aren't working properly. My muscles can't pump the blood back up. My husband can get some of the swelling to recede by me laying on my stomach and manually pushing it out. Like I said, it's not the entire foot, only where the tendons lie.

I also have a pins and needles sensation that started off mild in the beginning but now is horrible. It often keeps me awake at night. When my feet are cold, the pain is the usual pain but when they begin to warm up, the pain increases to terrible levels. I've been told this could be due to disuse atrophy in an indirect way. My muscles and fascia, which are tight, begin to expand when I try to walk and nerves are in rich supply within the fascia and muscle.

I also have swelling but it's been there since prior to this beginning. I always had mild swelling around the ankle bones (inside and out) and it never bothered me, I attributed it to age. After this began, it's gotten puffier as time goes on but only seems to be over the tendon areas and not the entire feet. My shoes rub something awful over those areas and I often have to cut my shoes.

Wearing shoes is an awful experience. They seem to squeeze my feet and cause this pins and needles sensation more so than when I have no shoes on. This has been attributed to the shoes pressing on the swollen tendon areas which irritates the nerves, so I'm told.

I have not noticed any skin, nail, hair or extreme changes since this began. My feet never feel like they're on fire, nor do I have any numb or stabbing nerve pain issues. I do not have any movement disorders, shiny skin or "some" common symptoms that I've read about.

I do have cramping. If anyone rubs the inner arch of my feet, hours later, they'll be tight as rocks and I will have nerve pain with this that is within my arches and extends up the backs of my legs. It often makes my toes curl. in spasm. I do realize that the medial plantar nerve runs behind this muscular part of your arch so am unsure if this is getting compressed.

I'm continuously told that this is disuse related but I wonder at times. I do realize there are no long term studies on disuse atrophy that extends for 3+ years. It seems as though the longer I lay here and waste away, the worse the nerve (pins and needles and cramping) worsens. I also do know that if one is inactive for a period of time, RSDS/CRPS can develop. I recently had another set of x-rays of the feet and asked if I had any osteoporosis or arthritis and was told no, my bones themselves looked pretty good.

I've been to pain management on 6 occasions in which I was always told either "I don't do feet" or it could be some form of neuropathy. I was always offered nerve related drugs in which I can't take as they make me feel suicidal.

I had an ultrasound a few weeks back that showed I did have peroneal tendonitis again from the constant pull of my shortened and tightened peroneal muscles pulling on the tendons. Since the equinus is back, my achilles are also swollen again, as well. His plan was to offload the tendons with orthotics, possibly try PRP or prolotherapy injections and as a last resort, exploratory surgery which I'm firmly against doing. I want a clear cut diagnosis prior to any type of surgery.

I do have days here and there but not very often when I can walk about an hour, broken up throughout the day, still with pain and swelling over the tendon areas around the bones of the ankles, only. I have no sensitivity to touch and can have my husband do a deep tissue massage on me which really helps. I've tried acupuncture and was only left with bruises.

I have been going to a chiropractor for a few months who performed a cuboid adjustment on me and it was the first time in 3 long years that I had 0 pain for 3 hours! I was elated, I walked around (gait still off though) felt no nerve pain and thought this was behind me. Unfortunately, the pain returned in the middle of the night. The same old pins and needles that kept me up into the morning when my husband could rub out the tightness.

I notice when I'm on my laptop late at night, I'll extend my legs out in front of me. Within 30 minutes of my heels resting on the bed, the pins and needles will develop and then go up into the back of my calves. I "thought" by doing this, I could stretch my legs out but it almost seems as though I have some form of nerve irritation in the backs of my heels. I had to cut my shoes in the backs due to the swelling and inflammation of the achilles.

If you've made it this far, I appreciate it. I'm almost done.

I guess my question is, does any of this sound to be RSDS/CRPS to any of you?

The strangest thing that has me wondering is that I have NO pain when I wake up in the middle of the night. Does this disease produce pain 24/7?

Mine seems to be "after" weight bearing which makes me wonder if this is a problem with my long term disuse atrophy and tendon/gait issues or what.

I was always under the assumption that while everyone is different, that for the most part, this disease causes horrible "burning" pain and that there are NO breaks in pain. I have no burning and as long as I don't walk, I have no nerve pain. I also have no nerve pain or pain of any kind if I wake up in the middle of the night.


If anyone could offer any thoughts or advice, I'd greatly appreciate it. I'm getting conflicting information from the medical community stating that if I indeed had RSDS/CRPS, that the pain wouldn't leave me as it does when I awake at night or don't weight bear. I'm being told that this much global disuse atrophy would cause symptoms similar to mine. I'm very confused, want an actual diagnosis and want to help myself and get on with life the best that I can. I'm on no pain killers of any kind, either.

I feel like I'm living in groundhog day for 3 years now.

Thank you for anything anyone has to offer.

Best,