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 03-19-2008, 10:21 AM #1
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Default RSD and Rheumatoid Arthritis

Has anyone had experience they can share regarding RSD and Rheumatoid Arthritis? I have had RSD since’86, primarily in my left leg, but it started to spread to the right one about 2001.

Early in 2004 I began getting a lot of pain in my fingers, wrists, and back of the hands. After stumbling around to a few different Orthopedics and Rheumatologists, I finally found a young woman last year who is really on the ball and not afraid of digging in a little. She found I have wide systemic Rheumatoid Arthritis and has started me on a cocktail of drugs to target the RA, instead of just more pain pills to mask the symptoms.

Even with all of that, I am in terrible agony much of the time. I do computer work and some days after about three hours, I am totally unable to use my right hand. I have had shoulder pain so severe that I can’t lift my arm more than about three inches. This is while being on both Oxycodone and Percocet.

At my last visit, she asked if I could distinguish the RA pain from the RSD pain. The pain I describe in my hands and shoulders doesn’t seem to match the severity of the RA. The two areas (leg and hand/arms) do seem different, but it got me thinking: Even though the two conditions are not related, one main symptom of both is severe pain. Is it possible that the RA pain is being blown up by the RSD? Does anyone else have this combination?

Thanks to all…

Mike
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Old 03-24-2008, 05:01 PM #2
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mike,
I don't have the answers to your questions. However, i want to ask you is your arthritis caused by RSD. How did your doc treat you with your rheumatoid artritis?
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Old 03-24-2008, 08:37 PM #3
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Not sure if this will be any help or not. I have Fibromyalgia & RSD. Fibro officially dx'ed since 1989, this type of pain my whole life. RSD officially dx'ed since 2004, this type of pain & sensations since 2003. Fibro pain is body wide spread body pain in muscles etc. RSD pain started in my both of my feet at the same time, left foot worse & still is the worst one. Yes the Fibro pain is way different than RSD pain. RSD pain mostly over rides the Fibro pain. But now that RSD pain is under better control since fall 2005, I feel the Fibro pain more often, like today it really sucks big time. The weather is about to change from perfect to of course, not so perfect. When the BP (barometric pressure) goes up or down, up being the worst. Wet & cooler & windier. Typical spring weather. But I can feel the damn weather changes, BP changes, way early with the Fibro pain.

I take Morphine for RSD pain, with Oxycodone for BTP (breakthrough pain). I also can take a bit more morphine as needed due to all the weather causing me more pain.

I do not think having RSD causes Fibro pain to be worse nor vice versa. It just is. The RSD pain was so bad when it started one morning that I would say for almost 2 yrs I did NOT even feel the Fibro Pain. And up until RSD hit, I totally thought Fibro pain was the WORST PAIN I would ever probably feel. When asked about pain using 1 thru 10 being the worst, I would say I had days of 10 +++ (plus, plus, plus) it was so bad. It would keep me bed ridden for several days at a time. I would have to take loads of Aleve or Motrin with Norco. And it got so bad after a car wreck in 1993 I was taught how to give myself Torodol IM injections for headaches & Fibro pain both. That car wreck made the Fibro pain get even worse than it already was. I even missed work off & on in the spring or fall. Those were the worst ever times for me with Fibro pain. That is, when the Barometric Pressure would go up & down. And when it went up it was the WORST EVER!!. I still suffer Fibro pain due to BP changes, but I no longer have to give myself Torodol injections. An Atlas-Orthoganol Chiropracter fixed my neck & got pretty much rid of the headache pain as long as I continue to see a NUCCA Chiropracter for maintenance to keep the headaches at bay now. If I take Aleve for the Fibro pain along with Morphine for the RSD pain, I can keep the Fibro pain in better control during BP changes.

Man I hope this made sense..........*LOL* If not well ask me anything you would want clarificaion on. *LOL* I am really sleepy here lately. It gets day light so early any more I am having a difficult time going back to sleep in the mornings after taking my 6am meds. It is frustrating. So anyway I am loosing sleep & having a hard time catching it back up.

Good Luck,
DebbyV
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Old 03-25-2008, 08:14 AM #4
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Quote:
Originally Posted by numb View Post
mike,
I don't have the answers to your questions. However, i want to ask you is your arthritis caused by RSD. How did your doc treat you with your rheumatoid artritis?
Numb
I doubt the Rheumatoid Arthritis was caused at all by the RSD. This systemic disease is generally part of a person’s make-up genetically, like whether one will develop baldness, or have green eyes. It often shows up when we are children or teens, but some will not see it until later, like me.

This is totally different from osteoarthritis which most people associate with “wearing out” joints. Roofers get it in their knees; typists get it in their fingers, etc. I suppose that type of arthritis might be connected to RA, but I really don’t know. The cause and treatment is completely different.

After having a couple of Rheumatologists shrug their shoulders, I found one who is ambitious enough to dig in and try to find a treatment. Currently, I am on one of the more standard drugs for RA – methotrexate. She started with a low dose, but I am now at maximum. She now has added Plaquenil, but it is not really doing anything.

The next step is what she calls the “big guns” – which will be Biologic Response Modifiers. This makes me nervous. Not only do they have some nasty potential side effects (severe swelling, weakness, cancer, TB) but they also call for frequent sticking. They are administered subcutaneous injection, muscle injection, or intravenous infusion.

I am currently waiting a decision of “medical necessity” from the insurance company, and then the choice gets thrown back to me.

Like Debby mentioned, I am one a multitude of pain killers already anyway, so nothing was added for the RA. I am taking oxycodone regularly, with endocet and/or ultracet for break-through pain, depending on the severity. I also have 800 mg of ibuprofen three times a day for joint swelling. These are all just fly swatters against the dragon.

Mike
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Old 01-21-2013, 12:40 PM #5
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Default rsd and arthritis

Hi.I broke an arm two year ago which triggered rsd within two weeks (now known in hindsight...but not then).Was diagnosed after rsd spread to hand while in cast (severe swelling, sausage fingers, intense burning and crushing pain).Fingers on right hand became permanently 'frozen' in claw shape with very limited movement (which seemed to be triggered to worsen by aggresive PT). RSD spread to shoulder within three months of inital injury, causing 'frozen shoulder', adhesive capsulteits, which neccesitated a surgical procedure to 'release'. That went well, regained movement in shoulder and reduced pain. About 8 months after shoulder procedure, pain in shoulder returned, without the 'freezing' this time. Now, a year and half later, stiffness and pain have begun in opposite hand. Pain, however, is not of the burning type. Pain has also begun in opposite shoulder. I have had my share of 'arthritic' pain (I break horses for a living, with numerous broken bones amassed over the last thirtyy years and the resultant expected arthritic changes from them). The new shoulder pain and hand pain seem however to be directly related to rsd, and not to any previous injuries. A flare in rsd pain causes the shoulder and hand on the opposite side now to become much worse. I have been on Cymbalta 60mg per day for more than a year. Almost completely negates the 'burning. crushing' type rsd pain. Does not at all mitigate the deep-ache type of pain, or the arthritic type pain. I take arthrotec (diclofenac) and vicodin for the worst of the severe aching.
What type of medication is your doctor using to treat the RA symptoms?
I would love to know, with the possibility of looking into them to prevent increasing spread.
Thank you for any info!

Quote:
Originally Posted by bassman View Post
Has anyone had experience they can share regarding RSD and Rheumatoid Arthritis? I have had RSD since’86, primarily in my left leg, but it started to spread to the right one about 2001.

Early in 2004 I began getting a lot of pain in my fingers, wrists, and back of the hands. After stumbling around to a few different Orthopedics and Rheumatologists, I finally found a young woman last year who is really on the ball and not afraid of digging in a little. She found I have wide systemic Rheumatoid Arthritis and has started me on a cocktail of drugs to target the RA, instead of just more pain pills to mask the symptoms.

Even with all of that, I am in terrible agony much of the time. I do computer work and some days after about three hours, I am totally unable to use my right hand. I have had shoulder pain so severe that I can’t lift my arm more than about three inches. This is while being on both Oxycodone and Percocet.

At my last visit, she asked if I could distinguish the RA pain from the RSD pain. The pain I describe in my hands and shoulders doesn’t seem to match the severity of the RA. The two areas (leg and hand/arms) do seem different, but it got me thinking: Even though the two conditions are not related, one main symptom of both is severe pain. Is it possible that the RA pain is being blown up by the RSD? Does anyone else have this combination?

Thanks to all…

Mike
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Old 01-21-2013, 02:26 PM #6
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caitlin9489, just to let you know you replied to a very old post that dates back to 2008.
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Old 04-09-2013, 12:49 PM #7
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Shocked Rheumatoid arthritis and RSD

Not sure if the thread is active any longer, but worth a try I guess. I've had RA for 8 years. Intermittent flares affecting different body parts for a few days and remits with steroids (usually). Now, I am at the maximum doses of RA drugs and my doctor wants to try "biologic" drugs. I have delayed starting infusion therapy because of a past history of histoplasmosis in my retina and the fear of overwhelming infection and risk of death associated with this history and the use of such drugs. My doctor rationalizes "are you LIVING now?" I have had increased flares with my RA, but the symptoms are not just joint pain. When I described my symptoms to the rheumatologist, he mentioned that we may be dealing with CPRS/RSD. This struck a chord with me, as just prior to my having symptoms of RA and then being lab diagnosed with RA, I suffered a partial amputation of a finger. The finger was successfully reattached. During my recovery, I had intense pain that was totally disproportionate to what I would expect. I could not even tolerate air blowing on my hand. My surgeon thought it could be the start of RSD. I immediately started desensitation exercises on the affected extremity, which I thought was successful. I thought I had totally recovered and made plans for 3 hiking trips for the remainder of the year. Within a few months, I began having episodes where an extremity would swell, sometimes appearing quite deformed, and horrible burning pain, inability to move the extremity. It would last a few days then remit. I was diagnosed with RA. I would increase my prednisone and it would usually pass, but before I went to the doctor, and got the prednisone, the "flare" would pass in a few days using ice packs and heat packs alternately. I still had quite a lot of pain, but I felt like I was at least being proactive with the ice and heat. Now, I find heat sometimes makes my pain even worse, feeling like pouring hot water on a sunburn.
I questioned the RA diagnosis for years, because what I have been experiencing, is more than joint pain. Frankly, I have difficulty answering the questions regarding morning stiffness because I feel I am stiff always, and I feel the pain is present always when I have a flare. Winter is horrible for me, so weather does in fact change this. I know that I have RA because it is lab confirmed. Does RSD remit and flare like RA does? Is it affected by changes in weather?
When my RA flares, it can affect my hands, my feet, my knees, my hips, a finger, a toe. Sometimes there is a defined area of swelling, redness, and heat. Sometimes, it affects the entire extremity and cause nerve pain. For example if I have a flare in my shoulder or wrist it can result in the pain that one feels when they hit the funny bone.
My first RA flare hit me after a 3 week hiking trip in the Sierra mountains. I am not a "couch potato" and while pain is a major factor, the lifestyle change has negatively impacted my life. I'm just not sure which demon I am fighting. I wonder if I caused the RSD by pushing myself to exercise an RA flared extremity, or if the RSD was there even before the RA. I guess it really does not matter. My main question is: Does RSD remit and flare like RA? Can the limb return to normal after the flare? Because that's what I've got. A limb that can go from perfectly normal and change on a dime, increasing to twice the normal size, immobile, painful beyond comprehension in a matter of hours or days?
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Old 04-09-2013, 01:25 PM #8
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Welcome to NeuroTalk:

I'd like to respond here about body parts swelling up fiercely and going down in a few days...moving around. While I do not have RSD, I have had these swellings, including the abdomen, bladder, and left ankle. My right hand will swell up for no reason, then go away.

In my case it was a reaction to a blood pressure pill...an ACE inhibitor called lisinopril. It was acquired angioedema, + a drug induced lupus, which is now resolving.

Here is a post I made here recently with links to read:
http://neurotalk.psychcentral.com/post967824-161.html

I now have a tentative diagnosis of HAE from my internist and will be going to an immunologist once I am fully recovered from the drug reaction aspect. She believes my attacks of swelling, diagnosis of osteoarthritis, and GI upsets have all now been connected, and the reaction to the ACE inhibitor was some trigger for a worse attack finally.

This diagnosis is elusive and hard to pin down. It has only really been on the books since about 1972. My doctor had a CME last year about it, so is a bit more informed than most.
My problems were always GI spasms and cramping, with some vomiting when I was younger. I still have that, but my ankle is not swelling up so much now that the drug has been stopped.
Some foods trigger it too...mostly citrus, and nightshade veggies.

HAE or acquired angioedema is really thought to be rare, but I suspect more people have it than realize. So I am bringing it up here for you to consider.
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