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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Jeanne,

I thought I had MS and Several Docs said it was probable. But I had over 10 MRI's and nothing showed up. I aslo have visual problems, but it is seen in RSD, also.

Now, I know there is a study going on, trying to link RSD to Autoimmune. My Mother has about 3 types of Autoimmune disorders and she is beating herself up, saying she gave this to me.

This pain Clinic you are going to, are there PMD doctors there? Is this clinic based on Mental Coping or Do they administer pain injections? Before you get your cart before your horse. I would go to this pain Clinic and see what they say. If I were you I would stay away from Physical Therphy, until you know for sure RSD is ruled out. It sounds like you have RSD with the tingling, burning, and sensitivity and the COLD areas are classic RSD.


Here is a List of PMD's:

Dr. Robert T. Wilder PH MD <~~~ May be Neuro
( street address removed )
Mayo Clinic Rochester
West Rochester, MN

Renee Caswell - Anesthesiologist
Rochester, Minnesota

Dr William Phillips - Anesthesiologist
Rochester, Minnesota

Peter Wilson
Mayo Clinic - Dept. of Anesthesiology
Rochester, Minnesota


How far are you from Minneapolis? There are more Doctors there. They all treat RSD. I would stay away from Neurologists. Even if the PMD rules out RSD, he still will be able to treat your pain.

Wishing you a zero,
Kim
Kim. I am not going to a pain clinic yet. The orthopedic doctor that took my second opinion case gave me the option of going home to live with this or going to consult with pain rehab to learn to live with this. It may be neuropathy? All I know is that it is wearing me out.

I used to dance in my milk parlor to oldies music. Then had a sterotactic breast biopsy where it was supposed to be painless and I could get back to normal activities the next day. I experienced pain, as lidocaine didn't work as surgeon got into deeper tissue and I have very small breasts. I really didn't have alot of pain the first couple of days, but it gradually increased. My thoughts at the time is that my body was angry at itself. I had pain for about 6 weeks and then couldn't run for anther two after that. My doctor put me on large doses of ibuprofen and then Bextra. When looking up pain on internet...the closest thing I could find to what it might be was CRPS, only it was in my breast. It was on the left side, same side as my Feb. ct surgery release and the hypersensitivity. I wondered then if I had an autoimmune disorder. Anyway, in course of trying to get out of tailspin from dealing with the pain, I started exercising, trying to have lunch with friends once a week to avoid isolating and gave blood to do something nice for someone without them knowing it. Unfortunately, the giving blood twice, having a very heavy period when I am sort of going through menopause and having the surgery, I wound up with iron deficiency. The more I tried to stay away from the medical center, the more I ended up there...various things and I won't go into them. I told the physcial therapist last spring, the goats were the only thing keeping me going last fall as I had to milk them twice a day. And it isn't their fault they have me for a caretaker. I no longer even feel that way today, which isn't good. I'm trying to want to want to do things again.
thanks for the pm doc list. Would they still see me even though another doctor in the Mayo clinic system there has said I don't have RSD?
Hi Jeanne! I know how desperate you are to have a dx of RSD, but you can see many doctor's and some will say you do, & some say that you don't :confused: I myself saw THE DR OF RSD and he said I never had RSD. but 10 other doctors, say I do. My neuro went to school at the mayo clinic too! ;)
Keep searching for that Pain Mgt Dr.
It can be hard & listening to the symptoms that you describe it sounds like you do, but it can also be a combo ( say neuropathy). The drug Neurontin, did me in, and made me almost suicidal. I hurt myself more than helped myself, and the longer I took the drug, the more walls I walked into and fell over things, that I call the drug neROTTON. I was pretty much bed ridden before I got off that drug. Now with some it works fine (those with RSD), but I called the company direct and they said it was only to be prescribed as a con-injuct with seizure medication. :eek: It did nothing for neuropathey, and other things that you may have. It took me a good year to still get the long lasting ill effects out of my body before I felt human--this is after I quit taking it. I know how desperate we all are, but there is no magic pill to cure us. We just got to keep banging away until we find what works for you. That is why this board is so important.
We can share what works and what doesn't work. I also take amitriptyline 50 mg. at night to help me sleep. Being in pain can and will make you depresed, but you sound like you've been pretty active. There is no need to take it 3 times a day.
I'm curious about your stereotatic breast biopsy! I myself, might have breast cancer on top of the RSD :eek: :eek: When you had this supposedly pain free procedure, and you started getting worse, was it from this?? I know that you are 51, and menapause can play havic with a RSD body. When they did your breast procedure, did you have blood work saying that you were pre-menepausal or menepausal? I'm so sorry to read about your journey to find out what's wrong and then to try and do good (kharrma) by giving blood, and keep endin up worse. You gotta hang in there and find what works for you. S stay in touch with this board, because it is the closest thing to sanity that you have. I try to visit everyday, but drama gets in the way ( 2 teenagers!) Take care--Aloha Skooze
Skooze. I dont' know that I am desperate to have a RSD diagnosis...regardless of what Mayo doctor said that he almost wished I had it because I could get treated. It isn't something I would like to have, but I really would like to know exactly what I have.
I am off the Neurontin. I still had blurred vision three days after the last dose. It was only 300 mg at bedtime the last week. I had to drive 80 miles away to attend an adivisory team meeting....volunteering to help troubleshoot a farm operation to help farmer. I started getting blurred vision...not totally blurred, but noticeable.
I know what you mean about suicidal. I was actually thinking about it on a daily basis for a bit there. I am on Amitriptyline now. only 20 mg at bedtime, but it isn't helping me sleep yet....at least I don't get to sleep until about 1 am but then have a hard time getting up when I need to. Dreaming weird dreams, so I don't know if I really am getting the REM sleep I am supposed to be getting by taking the drug...at least not yet? I am supposed to see my primary doctor on the 20th after she gets back from vacation. I will ask her about a referral to a PMD and ask why I wasn't referred to the pain management clinic.

As for the stereotactic breast biopsy...no I didn't have bloodwork to show pre menopause or post. I had been having regular periods until then. Then, I suppose, I was stressed so I didn't have regular ones. Ended up having a uterine biopsy in Jan because of heavy period in Dec after not really having them for about 3 months. The pain from the biopsy did go away after about 6 weeks....it's just that I remember thinking and saying to my mom and chiro that I thought my body was attacking itself. It didn't make sense to have the amount of pain I had over a little procedure....And I have worked in spite of pain( to where nurse said I should be in bed, not doing chores) over the years. And yes, I still did most daily chores during that time...just backed off some the the heavier lifting and handling some of the big animals. I'd been used to tossing 50 pound feed bags and bales of hay.....
I just had a root canal done and the dentist has spread it over three sessions over three weeks...to reduce possibility of pain. He put a new type of relative of lidocaine in the regular place, but did put some in where top and lower jaws meet too.

I just read on an RSD site that acupuncture really doesn't do anything for RSD....or only as long as the needles are in. It is supposed to help most neuropathies? I also read that the placebo effect isn't as effective for RSD as it might be for other medical problems.
Anyway, I have an oriental medicine concoction to drink. I figure it won't hurt.
Thanks so much for the encouragement and support. It is uplifting to know people are here.





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