postop dx was lyme arthritis with extensive synovitis.doc sez today could be "reflex sympathetic dystrophy".

this has something to do with nerve damage.anyway,the pain goes through the roof.

i am wondering if any of you have had this"disease"? if so,is it tied to lyme? or does lyme fit anywhere in this dx?

please don't ask me to explain what this is.if you have it ,you know....

any taker's ....gary

As you said the pain is excrutiating. I am on heavy duty pain meds for my lyme-nerve pain as well as my RSD. They are separate pain syndromes and as you mentioned if you have it - you know it.

Interestingly, I had top docs (rheumatologist and orthopedic oncologist and an orthopedic) all immediately know that I had RSD...but none of them were able to tell me that I had lyme disease.

also ,did you have a bone scan? if so ,what did it say? and did you have surgery of any type before onset of rsd?

sorry for all the question's. i have to be careful of snow job's from the doctor's....gary

Lots of good people (a couple with Lyme, I think) and good info. One recommends using antioxidants (grape seed extract) to prevent symptom "migration" or spread to other body parts. It's a nasty disorder and agressive, early treatment is the best way to get it under control.

Your question about the relation to Lyme is an interesting one, and has gotten more attention than one would think. There are a number of articles on PubMed about cases of Lyme manifesting as CRPS.

I will answer as many questions as you have.

I am on Neurontin and extended release morphine (MS contin) and sometimes I take hydrocodone for breakthrough pain.

I did have a bone scan and there were about 15 hot spots on the scan, especially bad looking when compared to my other hand/wrist. I was beginning to lose my hand. It had turned purple, was mottled and I couldn't even have clothes touch it or wind blow on it. I started occupational therapy and I think it helped.

The onset of my RSD was due to a fracture in my wrist/thumb joint. Except that the brilliant orthopedic diagnosed me wrong - my wrist wasn't just fractured - it was dislocated. But in the meantime they kept me in a cast with it dislocated for six months!!!! That is what set of the pain syndrome.

Actually, my lyme was lying dormant until this happened. I had lyme back in 1985 and told I was cured so I never thought about it again. When this happened the recommended course of treatment was sympathetic nerve blocks (with lots of steroids). Horrible horrible experience. Guess what happened next? My lyme came back.

paisley ,i forgot to mention that i also have"fibro". and the only abx i am taking is ,doxy.400mgs daily.

my gp is giving me that.i was/am hopeing the orthopedist is wrong about this rsd.i would rather him do orthoscopic on my knee.

maybe then get tissue samples for lyme dx.

right now i am taking percocet,nortriptyline,lexapro,dilantin(just started) and the duragesic patch 75mcg.

all this and my thigh's burn,sore to the touch.knee is very painful.left thigh also feel's burning.

i read some about this rsd.and it must be spreading.i had my last surgery,2 years ago,and still going downhill.

you are right about lyme returning(dormant?) came back/woke up after the surgery.i had 4 mos. of iv ceftrixone.4mos later had surgery.

i know i was not "cured" with the iv abx.still trying for that.

now it seem's i have more on my plate...

thank's for the help....gary

Sorry to hear you're having to go through all this. But glad you're keeping us updated on your knee/leg pain. I think everyone here is concerned for anyone in such unimaginable pain.

It sounds like you have heard from the experts. There's nothing like talking to someone who's been there/done that.

I did a quick search on Lymenet, but didn't find anything specific; yet, I seem to remember some folks talking about this-----it probably was Paisley.

I found this educational website on RSD:
http://www.rsds.org

No real helpful information for you from me. I've heard it's horribly painful. I did see one TV report about a girl with this; that having a sheet cover her-----was painful.

I can't imagine such constant pain. My heart goes out to anyone with this or anything close to it.

Let us know about your bone scan and hope you can stay out of pain with the doctors' help.

At least this will send your question to the top again for the next crew.

I was supposed to have a couple of surgeries and we have cancelled all until my RSD is resolved.

Thru the DOC pax message board, I learned of some support groups. I'll check now if I still kept them in a special folder in my in-box. I'll come back in a few minutes with the answer. Here it is:
http://messageboard.pax.tv/index.cfm?frmid=5&tpcid=35178

It tells Paula's story plus her RSD support group site.

Bettyg

orthopedist removed most of my synovial lining.he said it "looked like bagdad". pain i had after the surgery,i figured WAS from the surgery.

but everything got worse and worse.2nd ortho doc said i need to exercise.i did.pain got wosre.

3rd orthopedist(now) wonder's why i wawsn't treated before this ,for rsd.

i have noticed that when any doc in general ,see's my record's(sez lyme arthritis) they don't know what to do.or don't want to get involved.

but they won't say so to my face.they jack me around till i get the unsaid message.mean time, pain get's worse.

thank God for my gp.he has stuck it out with me.i still have untreated lyme and /fibro?

i have those 'pressure point's". or is it lyme? or is it this rsd? rightnow i don't know what to think..

Paisley, I see in your message in this thread that you got the nerve block injections with steroids in them.

I did, too, 3 sets of multiple nerve block injections.

Did it make your pain a hundred times worse as it did mine?

I am only beginning to understand that putting injections with steroids in was the WORST thing I could have done!! The pain center was treating for nerve pain and didn't have the Lyme Disease in mind.

Would love to hear more about people's experiences with the effects of these nerve block injections.

First time I'm learning I'm not alone....

Thank you for posting this thread.

"I was supposed to have a couple of surgeries and we have cancelled all until my RSD is resolved."

How are you treating your RSD and hoping to resolve it?

i could sleep for days and days.

gary,
pain after any surgery is going to be bad. the difference between that and RSD is that it just doesn't get better, as one would expect with the healing process - instead it keeps getting worse.

when I learned that I had RSD I actually met to drs. who said "deny that you have ever had it because you'll never get anyone to do surgery on you ever again". It is considered a nightmare because it can get worse and it can spread to other parts of the body and there's no real treatment.

and again, that was before my lyme re-surfaced. both groups are seen as lepers.

my RSD and my lyme pain are very different. It's difficult to explain, but they are dfifferent pain sensations. as I said though, my RSD has gotten better so I do have hope that one day it will resolve itself.

I have heard of success stories. If I knew that it wasn't goint to resolve I would get the de-enervation procedure done. It was so interesting, even though the dr. numbed the nerves in the temporary procedure, it didn't affect how I could move and use my hand. I was able to lift a bag and turn a door knob for the first time in six months.

Between the first bone scan and the 2nd there were more black spots (hot spots), where bone loss was occurring. since I don't have fibro I can't compare, but I can see how one might view these hot spots as similar to trigger points. Each spot on my hand hurt, but the problem was that the spots kept spreading until the whole hand was involved.

with fibro I don't think you get the kind of physical changes? discoloration, mottled, changes in circulation, and I even had think dark hair grow in the spot of the original injury, where there was no hair before.

henson,
thanks for the hugs. I appreciate the support. yes I see RSD as an extra bonus to having lyme.

I also had 3 of the 6 recommended nerve blocks. I later found out that there were several types of steroids used in the nerve blocks. I was also taking oral steroids.

my lyme had been brewing, however, it hit very hard after these nerve blocks and I lost the ability to walk within a couple of weeks of these injections. at first I thought the RSD from my hand had spread to my leg, but that wasn't the case. still, no one had diagnosed me with lyme yet.

Ibrake4ticks,
what surgeries are you needing?

I am on morphine (ms contin) 12 hour extended release, neurontin, and hydrocodone for breakthrough pain. this cocktail of pain meds definately helps with my pain. I couldn't use my hand before. tonight, I am using all digits to type. if my rsd does not go away I will do this de-enervation procedure.

The 2 drs. who are doing this (only drs. in the world) began this type of treatment for diabetics with neuropathies...then they realized they could help RSD patients as well. the procedure is difficult for me to explain. they do have a website that I will have to dig out tomorrow if anyone is interested. through microscopic incisions they kind of turn off the nerve without changing the affectiveness of that limb.

bone doc did point out to me a dark(shaded)spot on the end of one of the bone's under my knee cap.

that is when he bought up rsd.i still have painful "crunching" under my knee cap.that is very painful..

hope you and your crumb snatcher's(kid's) are getting better.i wish you well.and thank's again.
, gary

home you get some relief from this