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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 05-10-2012, 07:42 PM   #1
Join Date: May 2012
Location: USA
Posts: 5
Kathryn802 HB User
New member: RSD remission. Advice and help needed


10 years ago, when I was 22, I was diagnosed with RSD in my left foot. I went hiking the week before I graduated from college. When I returned, my big toe on my left foot hurt and in about a week or so that pain spread to my entire foot and the entire foot swelled inhibiting my ability to walk. I went to multiple doctors and they tested me for everything from Lyme and lupus to HIV. My x-rays were normal, but clearly with the amount of swelling and pain, there was something wrong. Finally I had a bone scan that showed almost the whole foot lit up. I was sent to a rheumatologist and he diagnosed me with RSD. I don't remember burning pain, but there was extreme, extreme pain. My toes became deformed almost immediately. There was increased sweating and hair growth and a very pale look to the foot. It took about a year, during which I had to delay going to grad school, and lots of medication to go into remission. I had two sympathetic nerve blocks that finally kicked the RSD out of me.

Complicating matters, I was diagnosed with severe psoriatic arthritis about 2 months after my RSD diagnosis. In the 10 years since RSD, my psoriatic arthritis changed my life. I had to give up my chosen profession (teacher) because my mobility is very limited. The PsA has spread throughout my entire body, but is most pronounced in my left foot where the RSD was. My toe joints are permanently deformed. Medication is unable to control it.

Current problem:
About 3 weeks ago my left shoulder blade started hurting. The pain quickly spread down my upper left arm. In addition to severe pain, I lost all muscle strength. I couldn't lift my arm beyond a 45 degree angle. I assumed it was the PsA. My rheumatologist (same guy who diagnosed me) gave me a short blast of prednisone. It did nothing. The pain was so severe, I had to take a few days off work. Having PsA, I have a pretty good pain tolerance, but this pain is beyond the norm.

Also, when I was in the worst pain, my entire left arm went ice cold to the touch, while my right arm (the normal one) was a normal temperature. I went to see my rheumatologist again. My whole arm was swollen and hyper sensitive. He said he didn't think this was PsA related, because it was much too intense and the pain was quickly worsening. He thinks it's either the return of the RSD or some other type of neurological pain; possibly MS. He put me on a massive prednisone blast: 60 mg for 3 days, 40 for 3 days, etc. He told me how I responded in the next weeks would help him determine what's going on.

Now, I know I've battled RSD before, but I've spent so many years focusing on the PsA, that I don't remember much, except pain. I spent last weekend in bed, and I was feeling a little better. Then I tried to go to work again; was there for 30 min., and couldn't stand the pain. I'm right handed, so I tried not to use my left arm as much as possible, but any amount of movement of my body; moves that arm, creating unbearable pain. I called my rheumatologist and he told me to take 10 days off work (I'm on day 2) and to continue my prednisone taper.

That brings us to the present: I've been home for 2 days and not moving and the pain is quickly changing and worsening. I'm on 40 mg. of prednisone. Before, if I rested, the pain lessened. Now, it's constant. I'm having pain throughout my entire left arm. It's gone from being ice cold to burning. From the elbow down, the pain is a constant burning; shooting pain. My arm feels like it's being held over an open flame. When I originally had RSD in my foot, the pain wasn't burning, just bone shattering. This type of pain is new for me. If anything even brushes against that part of my arm, the burning intensifies. Even loud sounds and vibrations cause the burning to increase.

The skin where the burning is located looks like it's been mildly sunburned or discolored and it's very slightly shiny. There's one tiny pustule. The burning is unrelenting. The arm is getting increasingly weaker and I can't even hold my cell phone in my left hand because it causes my arm to shake too badly. I'm also getting occasional hot prickles of pain.

Does this sound familiar to anybody? Am I going crazy?

I can't tell if the pain is worse than my original RSD, it's very different. I don't even know for certain if it's the RSD. I also don't have to move my left arm, as much as I did my left foot, so that might be making a difference.

I'm supposed to return to work on May 21st and as it stands right now, I don't know how I'll possibly be able to do that.

What should I do? Should I call my rheumatologist tomorrow and tell him of the burning pain and skin discoloration? What should my next plan of action be?

Last edited by Kathryn802; 05-10-2012 at 07:52 PM.

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Old 05-10-2012, 09:54 PM   #2
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Join Date: Apr 2012
Location: Carlisle, Cumbria, England
Posts: 33
Able65 HB User
Re: New member: RSD remission. Advice and help needed

Hi, firstly can I express my sympathy as you're obviously 'going through the wars', I have enough trouble coping just with RSD in one leg.

My opinion is that yes you must immediately inform your rheumatologist of the burning pain. Why? because you have all the classical symptoms of RSD/CRPS. The allodynia (pain from a normal stimulus), hyperalgesia (an increased sense of pain), oedema and abnormal sudomotor activity. He/she will need to know for a diagnosis which, as all the 'old-hands' here have drummed into me, it's time sensitive, to get therapy in the first months of this is imperative! The burning pain seems a common thread for most although 'gravel-rash' was what I described it as (more 'being flayed' but being a Brit we have to do the stiff upper lip and laconic bit). I've found that my pain perception, if not the level of pain, has changed. Your memories will probably have glossed over how bad it was, a normal response, but also pain perceived more proximal (ie. shoulder rather than foot) is always judged as greater.

The other factor to stress is your previous diagnosis of RSD. The operative term is that you went into remission. You were not cured, this increases the likelihood exponentially that this is a relapse.

The prednisolone isn't the normal response, as far as I'm aware, but there's research that has shown high-dose steroids have a beneficial effect (how statistically relevant is unclear).

Just as an aside, I'm not familiar with anyone who describes deformation of digits as a symptom of RSD, it is a known effect of your PsA. I was just wondering whether the PsA set off the RSD and not the other way round. Saying that there are a few papers published which show RSD as the antecedant of PsA-like symptoms.

Best of luck and my thoughts are with you!

Old 05-11-2012, 01:00 PM   #3
Join Date: May 2012
Location: USA
Posts: 5
Kathryn802 HB User
Re: New member: RSD remission. Advice and help needed

Thank you Able65! On your advice, I called my rheumatologist. First, he sent me to my regular GP to make sure I didn't have shingles which he considered due to the redness and burning in my arms. My GP confirmed that I don't have shingles.

Now, they want to do a cervical MRI next week to make sure I haven't herniated a cervical disc. Symptomatically, what's the difference in pain between arm RSD and cervical herniation? I know both can cause pain down the arm, including burning. Because I have Psoriatic Arthritis, I have a certain amount of neck pain on a regular basis. My neck doesn't hurt any more than it usually does. The burning pain and hypersensitivity extend from my shoulders down to my hand. My hand itself seems to be spared.

If my cervical MRI shows no herniation, then they're going to conclude that the RSD has returned.

To answer your question: While I was diagnosed with PsA after RSD, it seems that I haf PsA first. I was having occasional joint pain long before the RSD. I had psoriasis for about 10 years prior to diagnosis. When I was going through the diagnostic process for RSD, they assumed that I had some kind of stress fracture from hiking that caused the RSD. Now that we know I have PsA (which they didn't at the time), I believe the thinking is that the PsA caused the RSD. I know RA can cause RSD, so given that PsA is also autoimmune regulated, I think the same holds true for PsA. The joint deformity is probably from the PsA that went crazy when I had the RSD.

The diagnosis of PsA is an interesting stort. While I was being treated for my left foot RSD, I started to have diffuse pain in most of my joints. The doctor thought something else might be going on because the other pain didn't fit into the RSD picture. My mother, who was with me at the time, decided to show him what we thought was a rash in my belly button. I'd had similar rashes for about as long as I can remember, but I never considered showing them to a doctor. When my rheumatologist saw the rash, he identified the rash as psoriasis and I received the PsA diagnosis. I also had characteristic PsA joint deformity and degeneration on x-rays and a negative rheumatoid factor. I'm also HLA-B27 positive, which is the genetic marker for the spondylarthropathies.

Last edited by Kathryn802; 05-11-2012 at 01:07 PM.

Old 05-11-2012, 11:42 PM   #4
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Join Date: Apr 2012
Location: Carlisle, Cumbria, England
Posts: 33
Able65 HB User
Re: New member: RSD remission. Advice and help needed

Hi Kathryn802

Glad to hear you went, and the fact both your rheumatologist and GP are as switched on as they appear, not to mention yourself!

I have RSD in my left leg only and so no personal experience or knowledge of how the pains may differ. As a nurse (and a one who has to shamefacedly admit I hadn't even heard of RSD before my own diagnosis) I'd think a cervical herniation would result in a continuous pain made worse by movement (maybe sharp stabbing pains) since the pain is effectively caused by the herniated disc pressing/pinching onto a specific nerve bundle. The RSD, if mine is any guide, is a continuous pain but, in addition to some pain on movement, the allodynia is not something I have heard caused from a herniation (I'm open to being educated by those more knowledgeable and experienced though).

I'm not sure if the fact your hand isn't effected is relevant or not, but from what I do know a cervical herniation affecting an arm to that extent generally causes pain/loss of sensation/tingling in the hand too. It also depends on where(usually C6-C7 but sometimes a C5 or C8) the effects are different. Variations to thumb or middle finger, proximal/distal aspect, etc. to be honest you'd need to speak to your GP as your described symptoms are confusing if it does turn out to be a herniation (doesn't take much to do that to me). It may be that the PsA is involved (spondylitis?), but I really haven't the knowledge, hopefully it will turn out to be something easily resolved (a change for you ;-) )

I'd, sort of, guessed you may have been HLA-B27 and, another guess, Symmetric, yet you sound as if you are managing as well, if not better, than anyone I've heard of - kudos to you! I haven't any idea of the true figures but you have psoriasis, then decide to become one of the 30% with PsA, then the 25% who have Symmetric - and now you 'want' to be one of the 3% to have RSD too!?! Aren't you special enough already? lol One in a million if ever 'met' anyone!!!

Keep the faith!

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