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Offline moonbeam

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RSD : Questions???
« on: August 30, 2006, 08:57:54 AM »
Hi,
Well last Friday I had a pain management appointment. At first the Doc said I didn't have RSD, that's before he even examined me. Somewhere before the end of the appointment he seemed to be leading towards saying that he thought I did have it. After pointing out a number of symptoms. First one was definitely sensitivity at the side of operated knee. While I find some relief in having some kind of answer for my pain and lack of sucess at rehabilitation so far it is frightening to think this is what I could have even in it's mildest forms. I guess the only way to rule it out is trying nerve stuff for meds???

 Anyone have any imput on this one I started having and still have a numbness at the site of the cortisone injection and now MRI states a cyst there. Pain management guy says that shouldn't cause me pain, but at the height of my pain out at the lateral side is where I feel pain and tightness. Does anyone think my RSD factor came from that cortisone shot in my retinaculum at 3wks? I read somewhere there are alot of nerve fibers in the retinaculum. I mentioned that to pain guy. He disagreed there were nerve fibers in retinaculum.  I believe that's exactly where and why I have pain, numbness and now a cyst. I feel as if the fibers are  tightening around the cyst and that becomes painful. Has anyone developed a cyst at injection site and can they resolve on their own?
I've actually had the best relief of knee pain the last two weeks either due to Celebrex or a new alternative therapy using I believe through a magnetic field movement using induction to optimize the cells to their best energy to help the body heal itself. I know sounds crazy but I would try anything at this point.
 
Here is another question. I found articles on RSD on rsdrx.com/nerve that talk about radio frequency being detrimental to basically dying off  the nerves. I believe they were talking about a direct radio frequency sympathetic intervention in spine with cauterisation. Anyone know anything about this.I felt confused upon reading this and I mentioned the use of Molecular Enhancer to the pain guy and he said it probably reduced the inflammation and that's why it was helping pain.
 This was just a something called an enhancer, but I worried I had been using something that could worsen my symptoms.

Doctor hasn't done any blocks yet. Time was short and I don't think he would do them at this temporary makeshift office I saw him at. He prescribed Lidoderm patches 5%700MG and the use of Pregablin(Lyrica)75mg 2x a day. Been happy with the patches although it hasen't completely deadened my back pain.
 Just added Lyrica  tonight because there hasn't been a day since Fri. I could test it and not have to drive a car. My neighbor scared me . He said that drug made him confused to the point he didn't know what he was doing.

Can anyone tell me what pain blocks they've had done? Were they done while asleep at a surgery center or awake in docs office? Are patches and Lyrica a good start to treating RSD and will they work alone without a nerve block? These nerve blocks have me nervous. A friend's husband had back injury , had a nerve block and now has permanent numbness in foot.

I'm trying to get quads stronger while trying not to imflame the knee. Which it is inflammed. MRI shows effusion again. Surgery was 4/06. The problem is because of the inflammation I have been icing more now than at 8 wks. Research points out that ice is bad for RSD. How does one rehab without icing when exercise inflames it? Makes sense because knee is horribly sensitive after icing in it's defrosting stage. Has anyone tried epsom salt baths to bring down inflammation and I read MIlk of Magnesia(something about calcium channel blockers in it)?

I See my second opinion Thursday. Decided not to see Dr. Scott Dye in S.F.. Hope I'm not regretful about that.  Appreciate some input from RSD people out there.

Offline Jo

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Re: RSD : Questions???
« Reply #1 on: September 03, 2006, 04:55:32 PM »
Hi Moonbeam,

I've had RSD for nearly 5 years now and it is not easy - if you truly do have this condition then it needs addressing sooner rather than later, the sooner you begin to treat this condition the better.  You can even go into remisison if it's caught and treated early enough. Re-hab is an important part of managing this condition but don't over do it - be guided by your pain doc / therapist.

As far as icing - not sure about that I personally can't cope with anything cold touching my RSD knee / leg.

I've had a couple of different nerve blocks - there is a guanethadine block - this is where they inject into your foot and it runs up your leg - unfortunately the doc couldn't find a vain in my foot to give this but I've heard good reports from other people.

Then there is a lumbar sympathetic block - this was used as a kind of diagnosis tool - an injection into your back under local anasthetic - this worked for about a week on the burning "pins and needles" type pain I have.

After that I had a lumbar sympathectomy - this is where they inject again into your back with pain killing stuff and something that kills the sympathetic nerves - this was fantastic - lasted about 4 months but unfortunately - the sympathetic nerves do grow back.  Obviously everyone is different and can have different results - one girl that had the same sympathectomy done as me was still having benefits over a year later!  So whilst there are risks there are also great benefits - I'm sure you're pain doc will come up with the correct treatment for you and your condition - keep us posted.

Good luck
Jo
-x-
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline moonbeam

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Re: RSD : Questions???
« Reply #2 on: September 03, 2006, 06:03:09 PM »
Hi Jo,
Thanks for the reply. Currently the patches are helping. The burning only comes when I ice or overdue it. They still haven't concluded why I'm having inflammation , but the Lyrica(Pregablin) seems to really take that down and in the morning sometimes the heat is not present and the backache gone for awhile. Unfortunately I can only stand the dosing at night because of the side effects. Don't know what the plan is on the 15th when I see the pain doc. How far along were you when they diagnosed you ? I am almost five months post op. Finally someone listened after I pushed for pain management and saw someone a little over a week ago. NO plans for a nerve block yet , doc said we'd talk on the 15th. Hope he dosen't wait too long.
 I'm really frightened about this. Heard some scary numbing stories. My back hurts most of the time so I think maybe I'll have to go with something in the back.
Pain doc thinks I may have really mild symptoms , but are producing pain.
I've heard the epidural with (I forget the med injected ) brings 85% of the people relief. Luckily I read lots of literature and told the doc I'd downloaded literature from Forgrace.org and if I had one suspect symptom remotely mimicing RSD it said it should be considered positive until proven otherwise. He listened and looked of my list of eight suspect symptoms. Doctors just don't listen to thier patients.I think if more of them did we may have less postings of everything on this site.
So hopefully I'm on the road to recovery . All I can say is finally three of the four meds finally given haven given me a small piece of a normal life, but far where I was before the surgery. I hope my pain doc is  a good one.
Thanks so much for your post
Moonbeam

Offline moonbeam

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Re: RSD : Questions???
« Reply #3 on: September 03, 2006, 08:24:32 PM »
P.S. JO

I am sorry you have had to deal with this for five years and I thank you for educating those of us that may need feedback and info on therapy.  Have you had severe symptomatic changes beside pain. Have you ever gotten in remission. I am not in PT right now . Had approval to go back for standard PT and pain management doc wrote a prescriiption for water PT. Right now I'm swimming pretty much daily in friends pool without much direction , unsure how much I can do as I get inflammation and don't want to ice after exercise and feel after exercise I should. Many questions to ask pain management doc about on 15th
Again thanks JO!!!
 

Offline Jo

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Re: RSD : Questions???
« Reply #4 on: September 04, 2006, 08:13:48 PM »
Hi Moonbeam,

I think the inflammation can be quite a normal part of RSD - I have it and always have had it since straight after the op - just never went away I'm taking Celebrex to try and control it, it helps a little but not much.

It took 18 months for someone to give me a firm diagnosis of RSD although it was pretty certain 12 months after the op that this is what we were dealing with.

It's very very frustrating when I had and still have all of the "classic" symptoms of this condition but it still took so long to diagnose.  Because of this I have never gone into remission - in fact it's only in the last 6 months or so that I've got the pain down to a more managable level, I have more drugs than I can remember, some with horrible side effects but you'll try anything to get rid of that pain and burning!

I have the colour changes, I have the "freezing cold" leg/knee but feels like it's on fire inside, I have the swelling, I have the inflamation, I have the shiny leg/knee thing, I also have the poor circulation thing and have been very near to the edge depression wise because of this condition it's hard to get your head around something like this particularly when you've never heard of it until someone drops the bombshell on you that you have it!

All I can say is I really hope you get a good and understanding pain doctor - my pain doctor is fantastic and I'd be totally lost without her, she's just agreed to do another nerve block for me so I'm pleased as this is the only thing that ever worked for me on the burning issues.

I'm on a daily cocktail of 20 pills a day some of them morphine based but as I say - you'll do anything to get the pain under some sort of control.  I've been so bad some days I would've happily paid someone to chop my leg off above the knee but then that probably wouldn't help things!

See what you're pain doc has to offer, make sure you take a list of questions with you that you need answering - it is quite scary but read up as much as you can and remember everyone is different so what doesn't work for others might work for you and the other way round.

Please let me know how you get on with your pain doc - PM me if you need to I'm happy to answer any questions try and stay positive and good luck

Jo
-x-
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline moonbeam

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Re: RSD : Questions???
« Reply #5 on: September 05, 2006, 08:17:25 AM »
Hi Jo,
Have you had inflammation since your op in 01' or just since your scope in 03'?
Is it the RSD that causes the inflammation?Since the intro of pregablin and patches there is definitely a almost complete reduction in heat coming from the knee so does that mean the inflammation is RSD driven?
 But then I worry that there are also issues with the tracking from weak quads that are irritating the knee and now the OS won't acknowledge the need to keep an eye on that. Did your pain doc use any of the meds I'm using first or did they suggest nerve block first?
 I can't say if my pain doc is good or not. He took some convincing to listen to the possibilty that I had any RSD symptoms. I do have that feeling of fire inside my knee especially when I've iced after exercise. Today I didn't wear my patch because I was trying to change the time to cover my more active knee pain time(12 hrs. during the day) and boy was my knee sensitive , burning and hurting.In fact out of nowhere neck pain and TMJ pain this afternoon. I haven't had much TMJ  in years . Put a patch on my back and they disappeared. Could this be a sign that it is really nerve pain?
 Unfortanately, this pain doc only comes to my town once every couple of weeks. I can drive 1 hr. to their other clinic. However, I think he only works once a week. I find this unacceptable since there are other pain docs in my town but because of MPN networks for Work Comp I do not have much control over my doc choice. He wanted to see me at 2wks. yet he's not here for three.
How much does this disease limit small things like dental work,or having a back adjustment. Or do you only have to worry about surgery again? Did you have a nerve block for the last scope?
I never wanted to take Celebrex period now I'm afraid I'll be using it long term.
As far as a list of questions! the last three visits I've had to docs with lists either went unaswered or not fully answered. My second opinion last Thursday didn't even bother to look through the records sent to him. I find this par for the course as the pain doc didn't bother to look thorugh paperwork either. At this point I feel docs just aren't spending the time they should to review cases and have lost faith in finding a good doc who is willing to spend the time to figure this out.
Are your nerve blocks epidural with Depro Medrol and do you ever have numbness in other limbs so side effects after a block?
I can't imagine taking 20 pills to try to control pain. I feel as if there isn't one wasted post on this entire bulletin board as long as someone reads them sees something that relates to them and because of it is helped. Without this bulletin board I never would have recognized symptoms and relate them back to ones I had. However , I do have a neighbor with post hyperpathic neuralgia(from shingles) who has suffered for  two years with unrelenting pain regardless of a spinal implant to block nerve signals. That's why I was panicked when no one would listen and I was 15 wks. post op and knew if indeed I did have RSD mild or not my time frame to address and arrest was six months. I saw what he has gone through and surely didn't want to repeat that myself.  I sort of went through a really bad spell of depression and then when I felt like I was finding some help I felt more hopeful , until this and my 2nd useless OS visit. I'm confused about how I will rehab if this is truly RSD. I say if this is truly RSD because other than symptoms even be they mild there is no definitetive absolute diagnosis except response to meds right? Have you seen the web site about hyperbaric chambers and success for RSD?
Thank you and I'll try to pull together my positive thoughts for a hopeful outcome.

Moonbeam
 

Offline Doc79316

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Re: RSD : Questions???
« Reply #6 on: September 05, 2006, 01:30:35 PM »
Hi,

I was diagnosed with RSD in March this year after the classic and very dramatic symptoms hit like an express train just after surgery in January. I had the temperature and colour changes, the swelling makes me look lop sided and as though I've borrowed a leg from a rhino!

I also take Lyrica, 150mg 4 x day along with amitriptyline, 25mg at night and a boat load of other drugs, mostly morphine based (42 tablets a day) to deal with the deep rooted nerve pain.

For me personally, it never really goes away. Physio is near impossible at times and I have to ensure my bath water is 33-34 degrees, otherwise I can't tolerate the water on my RSD leg at all. The heated pool at the Hospital is set at 32 degrees, so I can't use it without being in agony afterwards.

It started in my knee initially- I suppose because that's where I had surgery. It has since spread through my whole leg and stops just below the top of my thigh. The burning pain is constant regardless of what I take, although at times it eases off. I use my own pain scale of 1-10 and my pain is usually at a 6-8. It often creeps up to 9-10 at night and there's nothing i can do about it.

I will try absolutely anything to help me function on a day to day basis. Today is a bad day for me. Just sitting here I am in pain. I will take whatever drugs are necessary or are suggested or offered by my pain management Specialist.

The only thing I am cautios about is the nerve blocks. I know of people who have ended up permanently in a wheelchair because of the course of treatment but it's just one of those possible adverse effects one accepts at the time. I don't personally think I could deal with that. I am on crutches now and if I am for the rest of my life then sobe it. But a wheelchair? No - I couldn't cope.

I still don't understanda s much as I'd like about RSD but there seems to be only limited info out there. If you knwo of any place I can get more info I'd begrateful. I have also thought of raising peoples' awareness of the condtion, particularly in the workplace but I don't know where to start.  Any ideas?

One thing I do is I wear a wristband with RSD on it. I've had people ask what it is so I suppose there are a few people around with a little more knowledge than they would've had if they hadn't asked.

I've also bee n told that because of the severity of my symptoms at times it's doubtful, although not impossible that it will go into remission. Living with this for life would be a nightmare but I suppose I have to take each day as it comes.

I'm off work right now for another 3 weeks. I'm going to spend my time trying to think of ways for my work colleagues to understand the condition. Then if I'm not too sociable at work one day, they'll know why.

Take care,

Laura x
« Last Edit: September 06, 2006, 06:29:04 PM by Doc79316 »
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline moonbeam

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Re: RSD : Questions???
« Reply #7 on: September 06, 2006, 07:02:13 AM »
 Hi Laura,

All I can say is I'm so sorry for the pain you have on a day to day basis an for all the people with severe RSD , I hope for a real treatment that eliminates pain without the use of 42 drugs. All I can say is WOW you have a really severe case apparently. It seems by the time frame they diagnosed you by three months after your surgery and you weren't able to arrest it by nerve block or meds?
 I see you live in England and don't know what is available there with the medical system however I was wondering if you came across this site rsd therapy.com., they talk about the use of hyperbaric chamber treatment for RSD. Supposidly allows the swollen limb to reduce. Anyway go and read it and tell me if you've read this before . I googled hyperbaric chamber and then googled RSD I believe. The is also a woman in Maine that talks about her experience with hyperbaric chamber for her daughter for RSD. She leaves this email to have people contact her if they are interested in finding out more . It's a different site than above. It is  [email protected]
My boss noticed I was walking better today. I'm on reduced duty. Suppose he thought that if I could walk better I could also do full duty. I commented I was walking better with the use of 4 meds. including pain patches. Told him it was a nerve thing . Seems easier than trying to explain the other. So apparently it's hard to explain how you just can't do what you did before.
 Also I do not have limb changes like you yet and hope it never gets that far. That in itself would be an awareness tool to coworkers. I think this site has been fabulous for bringing awareness to RSD.
As far as out there in the world I have my hopes on stem cells. If  reinjecting cells into a paralyzed rat can return them to walking there has got to be something  regarding this research that would help with nerve cells regarding nerve cell death I would think. I watch my poor neighbor with post hyperpathic neuralgia and hope that there is . It breaks my heart to see him have deteriorated to where he is now. As far as stem cell research I do have ideas on a untapped source I think and have been wondering how I can build the cause. Umbilical cord core blood  donation that takes the controversy out of stem cell donations.
I'm sorry your disease has progressed to where it is affecting your ability to earn a living. Apparently from this site RSD is more prevalent than most people would think, I know quite a few people with Post hyperpathic neuralgia and if you don't know what that is , it is a disease people have in the aftermath of shingles that really gets out of hand and causes pain by nerve death . The drugs are the same as RSD , the treatment the same, and alot of the pain outcome is the same. Ten years ago I couldn't have told you what Shingles was. I would have said it was a roofing material. Now I know it can mean debilitating pain.
Please elaborate on the nerve blocks. I'm afraid I may need at least one to start and see if they can nip this in the bud.
Hope tomorrow will be a better pain day.
Moonbeam

Offline Doc79316

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Re: RSD : Questions???
« Reply #8 on: September 06, 2006, 06:40:38 PM »
Hey Moonbeam,

Have you IM'd Nettan? She has severe RSD and has had nerve blocks. She's really experienced in what treatments are available and I go to her if I need answers about RSD because she's so much further down the line than I am.

I personally haven't had any nerve blocks, just an increase in pain meds from my pain management Specialist. I see him in about 6-8 weeks time so will have to put up with how it is at themoment for another couple of months. I can only hope it doesn't get too much worse. Having said that, I've not yet resigned myself to a lifetime of knee/leg pain so will try anything once.

Here in the UK umbilical cord blood donations instead of stem cell donations is possible but is very expensive and not readily available to new parents/patients. Those who do know about it can only go to a few places here to have it done so it's not really feasible for the majority of us.

Tahnks for the websites - I'm going to read up on them now.

Take care,

Laura x
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline moonbeam

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Re: RSD : Questions???
« Reply #9 on: September 06, 2006, 08:15:41 PM »
Hi Laura,

I read your threads last nite in some other places. My sister has a boss like that. Management from hell. Good luck with that one. Sometimes the best solution though you may not agree is to befriend them with love and they get guilty and sometimes it works because instead of plotting against you they have become more focused about caring for you. Just a thought, my sister in law had this problem , confronted her source , and over time became her friend. Just being confronted knowing she was found out about going behind other peoples' backs to upper management put her in her place and must have given her an "Ahah" moment about her behavior. Three years later, they are the best of friends. Just a thought , it's not for everyone.LOL
The core blood donation , is a thought in that if it gets promoted and embraced like the bank in Florida, there is no place in CA. then stem cell can move forward and maybe someday people like yourselves may be helped by the research that continues to move forward but is in so much controversy. My referring to it in terms of getting parents to donate something they might otherwise dispose of in the birthing process to possibly either bank and access thier core blood or donate it to stem cell research. Not sure of the cost, however my sister in law wanted to donate here and had to ship hers to Florida to a facility there that works with a hospital for donation. Doctor said she should embrace this cause , however she has four children to mother , one of which is only 7wks. so I told her it deeply called to me.
 Just a very deep thought at the moment. I'm so focused on my knee I haven't got that far on seeing how viable it could be to start a foundation here. I'm sure it's a huge undertaking of which I would be over my head in even entertianing the thought. No credentials here!!!

I have thought about a IM to Nettan if only to ask her if she's seen this site on Hyperbaric treatment for RSD.  I actually had some relief for the first time several weeks ago when I tried alternative treatment, I wrote about it on this post.
 Nettan is a sweet girl ...very supportive always of everyone on this site. I seem to have a very mild case so far so I can't even catorgorize myself with the both of you , however have you gone to Forgrace.org. ? I really loved the link ....RSD in layman terms written by a doc , but brought to down to a level everyone can understand.
I can't believe they haven't done any nerve blocks on you . I know you are cautious as I am about this , but I always thought it was the earlier lines of defense in arresting this. This is where I get confused about this disease. I read somewhere that Epidural-Depro Medrol has 89% sucess rate. Of course that might be for early on treatment as opposed to Regional Bier-32% and Brachial Plexas blocks-63%.
Went my OS visit today. He said I seemed happier, so whatever pain management guy is doing seems to be working. Said he's not for the narcotics , which I'm not on, but pain patches and Lyrica are fine with him. He said he supports the nerve block.  He just seemed happy that maybe he could get rid of me as hard to treat patient.(MY interpetation of course) Especially since I  didn't and couldn't bring my husband in tow today. He probably thought that was an indication that I was better. None of the pain management notes or second opinion notes had been transmitted  to him yet. So not much to talk over, just MRI results, with effusion and small cyst , which he absolutely mimimized. See him in another month. See pain management of Friday of this week. My life currently is either phy therapy, appointments, and working, very busy.

None of them really know what to do when you don't stay within the catagory of a standard case. I hope you can get your pain in good control soon. My thoughts are with you and always glad to hear from you.

Take Care Moonbeam

Offline Jo

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Re: RSD : Questions???
« Reply #10 on: September 06, 2006, 08:51:07 PM »
Hi Again,

I've been told that RSD does cause inflammation along with swelling - sounds like your inflammation could well be RSD driven but I'm no expert couldn't say for sure.

My pain doc tried various meds first with various horrible side effects - they even over dosed me by accident on ketamine because they didn't explain the dosage correctly!!!  I've had various strengths of morphine, I have anti epilepsy drugs, gabapentim, amitryptaline, I've tried so many I've lost count and forgotten most of the names of them too other than what I currently take.  I've tried opiate based skin patches - allergic to them and made me feel awful AND couldn't drive the car with them!

I have been offered a spinal cord stimulator - a permanent divice implanted to try and block the signals from the nerves to the brain but so far have refused it as this is a huge procedure with no guarantee that it will work, I'm not ready for something that big - not yet.  That's why I asked again that they do the nerve block - I've never had any other numb feeling anywhere at all other than my leg - even that wasn't numb as such just didn't feel like it was on fire - still felt tingly a bit like pins and needles but not pain as such.  Finally they have agreed to do another one I'm just waiting for the letter. 

Nothing is without risks be it medication or nerve blocks - you have to decide what is right for you and get as much info on it as you can.

I have been left registered disabled and cannot walk without the aid of a crutch BUT I count myself lucky as there are many other people with this condition who are in a much worse state than myself.  I drive, I work and I cope - just.

I didn't get the RSD from the scope - I got it from the TTT surgery nearly 5 years ago the most upsetting frustrating thing is that I was never told / warned that this could occur as a direct result of surgery?!  It's not the surgeons fault it's the surgery?  Hard to take.  I had the scope after my TTT for a floating piece of cartilidge - my left knee (the scope knee) has never been the same since but I don't have RSD in that knee - I'm currently waiting to see O/S again re further surgery to that knee.

As far as dental work - never had a problem with that - more surgery is an option BUT only with proper supervision from both the surgeon and pain specialist.  I'm trying to persuade my O/S to do surgery to my right knee after I've had the nerve block - this way reducing the risk of the nerves going hawire again!  He's currenlty not buying it though!

I've seen the reports about these chambers - we don't currently have on in my area though but looks like they've had very positive results.

My physio gave up on me years ago - discharged me saying there was "nothing they could do" I try to keep my knee and leg moving as much as possible but some days it's just so grumpy it's very difficult!

Keep on at the docs with your questions - you really have to make them listen to you.

Good luck - try and stay positive and keep us informed.

Jo
-x-


Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline qtkatie013

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Re: RSD : Questions???
« Reply #11 on: October 08, 2006, 02:05:15 AM »
has anyone with RSD experienced a very itchy rash that never goes away....  i just got diagnosed and i havent really heard of anyone complaining about itchiness?  just curious, because it is driving me INSANE  >:(
20 years old
March 2004-Plica Removal
September 2005-Plica Removed (again), Scar Tissue Removal
January 2006-Fulkerson Osteotomy
August 2006-Screw Removal
September 2006-Orthoscopic
October 2006-Diagnosed with RSD

Offline cherlyQ

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Re: RSD : Questions???
« Reply #12 on: October 08, 2006, 03:28:37 AM »
hi moonbeem,

i started with chondromalacia in the knees and after lots of frustration, pain and wrong diagnosis by many doctors, i was finally told i had rsd.
i was treated by dr laura audell at cedar sanaii in los angeles.  she's their specialist for rsd and is a fantastic doctor. because mine had one gone on for at least a year and a half, i needed 10 sympathetic nerve blocks, physical therapy and biofeedback with a pshychologist to get it under control.  it's very tricky stuff and the main thing i would say about it is that it's more about your brain than about your knees.  it involves your thinking processess and attitude is a major part of getting through it.   i now take long walks, ride my bike and live pretty normally.  i still have some small, wierd sensations from it but i wouldn't call it pain.   not bad after being immobilized and in a wheelchair and very depressed for over a year. feel free to write if you would like.  i've learned a lot about it in these last couple of years.
best of luck to you.   use my e mail  if you like since i don't always check this bulletin board.
cheryl    [email protected]