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update

Posted by goose on 7/11/05 at 13:59 (178169)

Hi Guys,

Just wanted to let you know that I am doing much better! I am done with the wheelchair and am walking (24 days and counting) again. Turns out this flare-up was Complex Regional Pain Syndrome or RSD but luckily I got diagnosed, had two lumbar sympathetic nerve blocks and am on Neurontin. I feel pretty good, almost normal minus any cute shoes and aerobic activity. I'm sure I will still have my regular foot issues but as long as I can walk, work, and not be in constant pain, I am happy. Thank you for your support and kind words!!

goose

Re: update

Elyse B on 7/11/05 at 14:45 (178171)

Hey goose, thanks for reporting in. Great news that 24 days of walking. I am very happy that you got a good diagnosis and was able to be treated rather quickly. I was on Neurontin years ago when I had neuropathic pain and it is a wonder drug. It takes a while to 'kick in' but when it does, things look up. Keep us posted.

Re: update

Ralph on 7/11/05 at 15:17 (178172)

Since RSD can be caused by just about anything do you think the friction massage that you had might have helped to bring it on. This RSD thing is frightening. After reading that a simple blood draw could even cause RSD I now think about it anytime the doctor asks me or my family member for a blood sample. I've got them using a butterfly set up when they want blood from anyone thinking it might be safer. Smaller needle etc.

Re: Neuropathic Pain?

Martin on 7/11/05 at 15:34 (178175)

Elyse,

I note your post with interest that you say you 'had' neuropathic pain. You may have seen my post earlier today on the subject.

Has your neuropathic pain now gone away? Do you still take neurotin? What are the side effects, if any?

I'd be interested to hear your experiences.

Thanks,

Martin

Re: Neuropathic Pain?

Elyse B on 7/11/05 at 15:54 (178177)

yes I had neuropathic facial pain in 2001. It was idiopathic, no none cause, no known cure so we treated it with Neurontin. After about 2 years it went away. Side effects were spaciness, ataxia (walking into walls), weight gain. You do get used to the side effects after a while and they are very tolerable. I tolerated it very well and it worked. It took me forever to figure out what the pain was, it felt like an awful toothache for 24 hours a day. Went to a bunch of doctors, finally went to a pain specialist and we tried to eliminate by using anti-convulsants which are used for treating neuropathic pain. Neurontin is one of the anti-convulants with the lease amount of side effects.

Re: update

Elyse B on 7/11/05 at 15:55 (178178)

well Ralph that is not reassuring as I get my blood drawn every month!!!

Re: Neuropathic Pain?

Ralph on 7/11/05 at 17:19 (178188)

How does one get used to spaciness and ataxia. I doubt I'd tolerate this medication very well. Seems like most people with nerve pain are put on Neurontin. Are you able to work and drive if using this medication?

Re: Neuropathic Pain?

Elyse B on 7/11/05 at 18:18 (178198)

trust me you get used to it. You up your dosages very, very slowly so as to not have terrible side effects. Yes you can drive and do EVERYTHING. It did effect anything that I had to do. It is not that you are constantly dizzy and walk into walls. It is minor and just a little noticeable. The stuff really works and if you have to deal with a little side effects it is truly worth it. I would do it again if I had to. There are many other anti-convulsants out there that are used for neuropathic pain and Neurontin is the best one, it also leaves your system very quickly so you don't have to have your liver checked periodically.

I think PF is worse in a way than neuropathic pain.

Re: Neuropathic Pain?

Martin on 7/12/05 at 04:23 (178222)

Elyse,

Thnaka for this info. What is ataxia? And why is neurotin anti-convulsant? Where your muscles convulsing?

It sounds like it was very effective though.

Martin

Re: Neuropathic Pain?

Elyse B on 7/12/05 at 05:23 (178223)

I describe ataxia as walking into walls, just a little uncoordination but it really is not bad. Martin look up neurontin on the internet or anticonvulsants and you will see that they have long been used to treat neuropathic pain. It has nothing to do with convulsions. It has something to do with neurotransmitters to the brain and the anticonvulsants stop the 'shocks' of pain in neuropathic pain.

Re: Neuropathic Pain?

Martin on 7/12/05 at 10:30 (178242)

Thanks Elyse, will do that.

Re: Neuropathic Pain?

Vern on 7/12/05 at 15:22 (178253)

The Drs. I have seen are settling in on a PN diagnosis. I tried incremental dosages of Neurotin up to 9 capsules a day. I don't believe it did anything for me except to make me slow.
I have been trying the U/V anodyne light for about a month now with no benefit that I can detect.
I think my next step is to go to a pain specialist that may try other drugs. Should I find anything helpful I will share it here.

Re: update

Sally on 7/12/05 at 23:11 (178283)

Pauline, I mean, Elyse, I don\'t think getting blood draws have ever stared up a case of RSD. I have done hundreds of veinipunctures and never have seen a case of RSD.
Sally

Re: update

Elyse B on 7/13/05 at 04:29 (178301)

Sally/Obnoxious never said it did. Ralph said it. You can read right?

Re: To Sally

Ralph on 7/13/05 at 08:49 (178310)

Someone told me it could so I posed the question on this site a while back.
I hope you are correct, because I worry every time I have to have my blood drawn.

My original post and a response to it.

Re: ESWT questions for Dr.'s View Thread
Posted by PodinFla on 7/04/05 at 22:47

Very true. I know a lot of pain management physicians see these patients. I used to share office space with a pain specialist and he saw a quite a few RSD patients. Any form of trauma be it surgery, an injury, an injection can stimulate the onset of RSD. Although very rare, it should definitely be mentioned when consenting a patient for surgery.

Message Number 177770

Re: ESWT questions for Dr.'s View Thread
Posted by Ralph on 7/03/05 at 22:15

I heard it's possible to get this condition (RSD) from almost anything even having your blood drawn. Any truth to this?

Message Number 177767

Re: update

Sally on 7/13/05 at 22:27 (178353)

Elyse:
How many people on the board have you not insulted yet?
Sally

Re: update

DavidW on 7/14/05 at 06:45 (178373)

Elyse has not insulted me as of yet!

Re: update

Elyse B on 7/14/05 at 07:22 (178376)

Why I would never insult you David. I also want to say I am so pleased with your progress and I hope it continues. You know it is interesting, your massage issues kind of go back when certain posters went to see a Dr. Josh Sandell in Minnesota and he did tranverse friction massage to treat PF. There was a whole backlash on this board from certain people and medical professionals who rejected the concept of massage/ART as a treatment for PF as you can imagine why. There were many who had great success with it.

Re: update

HilaryG on 7/14/05 at 07:55 (178377)

Elyse has added agreat deal to this board. (Also she has never insulted me and my efforts to cure my Atypical PF through ART).

Re: update

HilaryG on 7/14/05 at 07:57 (178378)

I would like to add that my partner paid $2000 (not covered by insurance) did not help at all.

Re: update

Elyse B on 7/14/05 at 08:02 (178379)

Hilary thanks, I BELIEVE in ART, I don't there is just one way to treat PF, and everyone is different.

Re: update

Elyse B on 7/14/05 at 08:04 (178380)

$2,000 for what Hilary, ESWT?

Re: update

HilaryG on 7/14/05 at 08:08 (178381)

Yes, $2,000 for ESWT to one of the members of Dr.Z's group. I insisted that she go to someone in his group, because I trusted him.

Re: update

HilaryG on 7/14/05 at 08:09 (178382)

And perhaps she needed more treatments, but who can afford more treatments at that price?

Re: update

HilaryG on 7/14/05 at 08:14 (178385)

This pod also sold her yet another pair of useless orthotics. I forget how much they cost.

Re: update

Elyse B on 7/14/05 at 08:22 (178387)

hilary do you remember my e-mail address, can you post me offline?

Re: update

HilaryG on 7/14/05 at 08:27 (178388)

Sure

Re: update

Dr. Z on 7/14/05 at 09:47 (178398)

If it was someone that I have taught and uses our Equipment services then ALL additional treatments were included. You can e-mail anytime at footcare @comcast.net. I would be very happy to discuss this with your friend and make sure she receives all services that she pay for.

Re: Venipuncture RSD

Keith O on 7/16/05 at 18:22 (178537)

Actually uou can get RSD from having your blood drawn. It is called Venipuncture RSD. It is rare but it is also one of the most painful forms of RSD.

For the most accurate up to date information regarding RSDS/CRPS, visit http://www.RSDHope.org

Re: Venipuncture RSD

Suzy D on 7/17/05 at 21:15 (178553)

sorry about that... I stand corrected..it is wwwRSD.org...Sorry...Suzy