Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-16-2020, 12:25 AM #1
InPain1234 InPain1234 is offline
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Question Need Help and Advice

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,
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Old 02-16-2020, 01:42 PM #2
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It doesn't sound like the usual RSD cases that I've read over the years..
We have sticky threads at top section of each health condition, if you want to explore those for more info..

Does chiro have a low level laser? also called cold or soft laser
Interferential stim? like a TENS or only better for cell health & treats deeper tissue
ultrasound tx for the tight muscles?

Slightly alternative things..
acupuncture
naturopath
bodyworker

Supplements if you aren't on a lot of meds..check online for interactions if you consider them...
MSM
Calcium/mag blend
Grape seed extract

Maybe severe myofascial pain - Google Search
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Last edited by Jo*mar; 02-17-2020 at 01:59 AM. Reason: typo - Interferential
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Old 02-17-2020, 01:43 AM #3
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Jo*Mar,

Thank you so very much for your reply, I appreciate your thoughts.

My Chiro doesn't use any type of low level laser. He does use Inferential stim, which feels good on my back due to all of my laying in bed, although it does nothing for my legs or feet though. I did ask once about where he got it, thinking I could use one at home and he said they're far over-priced to the average person and suggested I try a TENS unit. I did try that on various muscle groups to no avail, unfortunately.

I have tried acupuncture in the past as I've heard others say it really helped pain of various origins. For me, it did nothing and I awoke to bruises the next day.

I did try a naturopath about a year and a half ago, that didn't help me, either. I followed all of her instructions, took so many vitamins prescribed for months and still couldn't ambulate or get out of bed due to pain. She eventually told me that she'd release me of treatment as she didn't want to "take my money."

I have never heard of a bodyworker. I'm assuming it's similar to massage therapy? If so, I've gone to massage therapy for myofascial release, deep tissue and recently tried a CBD oil massage to see if it may take away some of the pain and still, nothing. It feels good while she's working on me but as soon as I weight bear, the pain returns.

I have not tried MSM and will give that a shot, as well as grape seed extract, in which I have heard of both. I already take a Calcium/mag blend which doesn't offer any relief.

If these ideas that I was given at the Cleveland Clinic here for muscle spasms, please try them to help your muscular pain. One of the Neuromuscular doctors that I had seen told me that many of his patients that suffered from ALS, Stiffman Syndrome and various disease that had to do with dystonia and severe cramping reported back that the use of Ivory soap within your sheets did help to some degree at night, as well as using a product called Hyland's Leg Cramps, which comes in a tablet or cream form did help many suffering from the above diseases, as well as many others involving spasming or cramping of muscle. I hope this helps someone.

Thank you for suggesting Chronic Myofascial Pain. I dd some research today and found it to be interesting and possibly pursuing. When I do go to Massage therapy, she's always telling me that my muscles don't feel like those of others. She states they have a very ropy and taut feel to them. The last time I had seen her, she said the peroneal muscle where the tendon inserts into was particularly bad. She worked on it for about 30 minutes and just couldn't loosen it up. I often wonder if this is a factor in having peroneal tendonitis. I will research this further and possibly get in to see a therapist or rheumatologist. In my research though, it seems as though information is so conflicting with some sites stating that swelling is prevalent with this whereas others say it's not. I'll have to dig a little deeper, but thank you for that suggestion.

I do apologize if anyone on the forum was offended by my presence here without a diagnosis. I've read the forum for quite some time wondering if this could possibly be why I can't walk and am in such horrible pain. I didn't decide to register until several doctors suggested revisiting the CRPS specialist to rule it out again since it's been a while and my pain has worsened dramatically to the point of being disabled. I'm told that plans are of sympathetic blocks and possible epidurals.

Again, I really appreciate your response to me and if anyone else has any thoughts or avenues to suggest, I'd appreciate it.

My best to all of you
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Old 02-17-2020, 01:58 AM #4
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I got an Interferential stim for about 100.00- 2006 or so.. and still have it..

digital Interferential stim - Google Search
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Old 02-17-2020, 02:41 AM #5
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Thank you for that. I wish I was told of this sooner.

Now, this is like a stronger TENS unit like the Chiro uses, correct?

My Podiatrist used an Alpha-Stim on me in the past and attached the electrodes on to me, turned it on and I tore the thing off. He didn't explain that it was to stimulate nerves and I felt like my nerves were going crazy when he turned that on.
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Old 02-17-2020, 08:26 AM #6
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It sounds like you have been thru hell. So even if you dont have crps, you have that in common with those of us that do. Sorry to hear of your pain and struggles. I can not offer any insight into what may be going on with your health. It does sound like you have done your research and I applaud you for being able to do that despite your challenges.
I can say from my own experience that I have never had a day of no pain since this disease started. I have had better/worse days, but none that were pain free. Most ppl with crps, myself included, can relate to your frustration with a lack of a diagnosis after being sick for so long.
I am relatively new here, so I dont know the rules all that well, but I see no harm in you posting here wondering if it could be crps. I have seen many such posts in other groups. Particularly since it is a diagnosis of exclusion and there is no test to prove it exists.
It sounded like you were on a good track until PT messed you up. That is so messed up, but happens all too often. I hope you can get back to that place you fought so hard to attain. I know how frustrating the unknown is, but I encourage you to keep looking for answers.
The Budapest criteria is the best we have right now, to my knowledge, to rule in a crps diagnosis. So if your multiple docs are saying it doesnt fit it would be prudent to look for other sources.
I sure hope someone can figure out what is going on in your body and provide you with some relief. Glad to hear it sounds like you have a great, supportive husband.
Hoping you will find some answers.
Barb
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Old 02-17-2020, 08:28 AM #7
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It doesn't sound like a typical case of CRPS but that doesn't mean it's not. What helps mine is heat, meditation, staying as active as possible and meds. I saw you say you couldn't take nerve pain related meds as they made you suicidal - which one(s) have you tried? Gabapentin and I don't get along but Lyrica is fine. Unfortunately by refusing these you may get a red flag from pain management. I would suggest asking for a muscle relaxer as it can help.

My regimen is this: lyrica, celebrex, butrans patch on schedule with tizanidine and hydrocodine as needed. I also use lidocaine patches. The butrans patch is the most helpful currently so I would highly recommend that. I hope this helps.
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Old 02-18-2020, 04:22 AM #8
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Barb (Irish),

Thank you for your response.

I'm so sorry and feel for you and everyone here that has dealt with the pain, fear, frustration in diagnosis and challenges you all face. I truly believe it's hell.

I've been reading over this forum for quite some time as time has passed and my pain worsened with no diagnosis. It seems as though my current Podiatrist wants me to go back to the pain management doctor that specializes in CRPS again for sympathetic blocks, a 3 phase bone scan and whatever treatment he thinks will be beneficial in either ruling this out or at the very least, trying to break the pain cycle and hopefully find a problem. I believe the last time I had seen him was in early 2018 and I was able to walk more then and had far less pain.

Today I managed 11 minutes of painful walking to fix the bed and dress myself. I've been in bed all day with horrible nerve pain that just won't stop. I've had 3 EMG's, plenty of blood work and an MRI from my brain all the way down to my lumbar and all was normal. I had asked about Tarsal Tunnel Syndrome on many occasions as well as some type of nerve entrapment or irritation and was told it wasn't any of those issues.

It's gotten so bad that I lay here all night waiting for my husband to get up in the morning to massage my legs before he leaves for work. I'm exhausted but can't sleep due to pain. After he leaves, I eventually pass out from exhaustion for 2-3 hours and then start the day over again.

I am not a baby or whiner by any means, but this pain has brought me to my knees. I can't fathom the hell all of you are going through. Again, I'm sorry if I've offended anyone here by asking questions. This was not my intention. My doctors just keep going back and forth mentioning a possible RSDS issue and while I've read a lot online, I'd prefer to talk to those that deal with this monster.

Thank you again for your response, I really appreciate it and I wish you and everyone here better days ahead.
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Old 02-18-2020, 05:04 AM #9
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annabanana123,

Thank you too for taking the time to respond to me.

Thank you as well for offering your thoughts and explaining what works for you. My goodness, it certainly doesn't sound like a "one size fits all" disease.

As for medications, I've tried Gabapentin, Lyrica, Cymbalta, Tegretol and quite a few others. My Psychiatrist prescribed all of these which pain management doctors can view in my health chart.

My Psy has even tried several anti-depressants that are known to help with nerve pain and I get the same result from them. He deals with many chronic pain patients and said my body is overly sensitive to these medications and I'm not the first he's seen with this sensitivity. I've tried so hard to manage with each of them and gave each a good try until my brain would actually "think" that I needed to commit suicide. It got to the point where my husband would call the doctor in the middle of the night with me rambling on about suicide, in which my Psy told him to stop whichever medication I was on immediately. My husband would always be afraid in leaving me alone until the drug was out of my system for fear that I may act on my thoughts.

My doctor did suggest Flexeril which I may try next. Thank you for mentioning it. I have to wait until right before the weekend though to start it so in case I get some reaction, my husband is here. I don't know why my mind can't handle these medications, when they may help me. Maybe this one will help some if I can tolerate it. My Psychiatrist and Pain Management Doctor have said that Black Box warnings were put in place for people like me. I just wish that I could tolerate something.

I did use Lidocaine patches faithfully for the first year which did at least take the edge off. Eventually they stopped working. My doctor also gave me an RX lidocaine cream but that did nothing. I've never heard of butrans patches and will inquire about those with pain management when my appointment comes. Thank you for the suggestion.

This has really been an eye-opening experience to me as to how chronic pain patients are treated. I'm not a drug seeker by any means, nor have I ever asked for any medications. I took whatever was suggested for me.

What really ticked me off was when I was sent to a Physical Medicine and Rehabilitation specialist. It was suggested that she "might" be able to help me. During my exam, she jerked my limbs all over and then with my husband sitting there, looked at him and said to me: "You really drained the life out of this room in 20 minutes." Tears rolled down my cheeks, I was in pain and would never be there if it weren't extremely bad. As I cried, she said sounds like you're depressed. I'm more of a quiet person and thought to myself: Lady if you dealt with what I have for 3 years now, laying in a bed, you might not even be here.

She kept insisting that looking at my previous testing from various doctors that there was nothing wrong with me. I showed her my ankles, how swollen they were and my cut up shoes, while my husband spoke up and insisted that there was something seriously wrong with his wife.

Her response....."She's depressed is all and could benefit from ECT."

I walked out and never went back.

Thank you again for your thoughts.
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Old 03-02-2020, 10:11 PM #10
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Oh my goodness! Your story sounds so much like mine its unreal!!!!!
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