daylilyfan

Discussion in 'Fibromyalgia Main Forum' started by fmhurt, Jun 15, 2006.

  1. fmhurt

    fmhurt New Member

    i'm wanting to ask you about rsd. you wrote a lot of the systoms and one dr told me i had rsd and my heart dr said he didn't think that is what it is . but i have tried to show him info about rsd and he want even look at it. here are my systoms they started after my stroke. my left foot started burning on the bottom and they was numb and iwould get tingling and shooting pain going through my foot i went to different drs. and they did'nt know what was wrong. and findly i was sent to a dr. that said he had seen this before in a woman that had a stroke and it was rsd. my foot burns like it is on fire and for no reason my foot will still have the burning pain but it will be freezing cold. my hole left side the skin burns and if i touch something cold with that side it hurt my skin, and if it eitches i have to be very carefull scrating i have to be careful about where i step because if i step on a little rock oe anything it feels like i steped on a hot cigarate.my foot is shiny and turns blueiss and the burning is going on up my leg. and the right foot is turning the same color and swelling but it don't burn. could you please help me i am very confused ,and the dr. also said he didn't think it was rsd because i don't have a lot of hair growth in the area. if anyone who reads this can also give me some input please this has been going on for a year now and between this and fm i have had it. i found a new dr. at a pain clinic but my dr has to send alot of info to him to see if he thinks he could help me but my dr want send all the info they ask for he said that was there place to get the info.so what can i do. carolyn
  2. daylilyfan

    daylilyfan New Member

    Sorry, I don't find this an overly long paragraph to read.

    Carolyn, I made a separate post to you, but you have not seen it, so I am going back and replying to this one in case you have it marked to send you an email in case anyone replies to this post.

    Juli

    below is the same copy I put in the other email....
    ---------------------------
    I am sorry I just saw your post to me. I have not checked this board in a couple weeks.

    Yes, it sounds like you might have RSD, but there are many things that have some similar symptoms.. peripheral neuropathy (sp?) and some other things - but nothing that is really similar to the real RSD / CRPS.

    The number one problem with RSD is finding a doctor that knows what in the world it is, and then, what to do about it. If a doc does know about it, often they learned something about it 20 years ago, and give you outdated treatments. There is a lot of research being done in it now, and treatments are changing fairly rapidly.

    Look up online the Reflex Sympathetic Dystrophy Foundation of America for a good start on information. They have a lot of information and articles. Also, look up Dr. Hooshmands' RSD Puzzles. Lots of good info there.

    There are a couple good message boards for RSD. Unfortunately, there is not a good way to tell you how to find them without breaking the rules here. I think it is ok if I tell you that you can look for boards and RSD, even for my user name, daylilyfan... I go by the same name in them. There are two that I am on that are the most active and have a really good base of people. Once you find them, and join, you can ask for doctors in your area.

    Some people have luck with pain management doctors, some with physiatrists (that is not psychiatrist - a physiatrist is trained to deal with a way of pain relief) some with neurologists. I see a pain management doc at the Cleveland Clinic once a year (I have seen her one time so far - it is hours away from where I live, but she has a lot of experience with RSD) and my family doctor, a local pain management doc, a neurologist, a rheumatologist, a massage therapist, an occupational therapist. My family doc is my main doc though, and she is AWESOME. She has gone over and above to step in and learn about RSD.

    The pain is a living nightmare... a hundred times worse than fibro.... and often not affected by narcotics (my case). I might as well just eat lifesavers as take pain medications. You are fortunate that yours has not spread in the amount of time you have had it... especially without having proper treatment. This gives me hope that you actually do not have it, and have something else going on, or have a very mild case. I have had it before - and it went in remission - but it took 4 years to do so. This time, I have had it 10 months, and it is spreading.

    With the time you have had symptoms, you should have grouved toenails, hair changes, shiny skin, swelling, coldness, sweating, insomnia, possibly depression. Light breezes are very often painful enough to make you scream. You won't be able to stand having anyone touch your skin lightly... for me, I don't have the breeze or light touch, but if someone touches me normally... that makes me scream... like in a friendly way, the touch my arm as if to say "hey, how you doing" and touch me on the shoulder... I'll hit the ceiling. Muscle spasms, blurry vision, memory problems... there are a LOT of symptoms. You may not have all of them... or may not have all of them at any one time. Another common one is body temperature going up and down. One hour mine might be 97.1 the next it might be 100.5 -- not because I am sick - because my sympathetic nervous system, which is what controls body temperature is confused and does not know if I am hot or cold. So all day long I put on and take off a sweater.

    Good luck to you... I will try to remember to check back in this thread to see if you have replied. I checked the "email me if someone replies" so that should help me remember! LOL.

    In the mean time, I'll remember you in my prayers that this is NOT what you have.

    Jules

  3. daylilyfan

    daylilyfan New Member

  4. fmhurt

    fmhurt New Member

    i have a lot of the systoms .with my body getting cold has just started off and on. i used to never get cold . i think that maybe the 2 blocks i got in my back did help some. but the burning is moving on up to my groin area. i even have a few places on my face that burns and they will etich so bad i get blood.the only thing that i don't have is a lot of hair growth in that area ,but my hair on my head sure thicken up. it had got so thin over the years. one dr, i went to said my hormons and thyroid was real low. ,And the only way my nails changed was they got paper thin .i don't know what is going on but i do know it hurts and burns real bad. the dr. has done x rays of my foot and leg and everything looks ok.but i know something is bad wrong. the neuro. dr, said there was know damage in my brain after the stroke they didn't find anything so they are calling it a TIA.because i have lost some feeling on my left side. i hope and pray i don't have rsd but i do wish they would find out whats going on. i do believe it has something to do with the nerves by what i read on the different message boards.thank you for writing me back and keeping me in your prayers, GOD BLESS YOU CAROLYN
  5. daylilyfan

    daylilyfan New Member

    Just be careful that the pain doctor is not interested in only doing a spinal cord stimulator. It seems many are, and from what I have seen, they only work in maybe 20 % of RSD folks, and that's only till the RSD hits the surgery site, or the wire becomes dislodged.

    First things I would want to do are
    take 400-600 mg of grapeseed extract a day - the Dutch research shows it can help prevent spread of RSD

    calcitonin (Miacalcin Nasal spray) can help the deep bone ache of RSD and help prevent the bone loss it can cause

    if you have normal or high blood pressure, catapres patchs (or used in the generic pill form) can also help relieve the pain, but can help the redness and coldness. This helped the coldness in my hand.

    Topamax helps me more, but most people use Neurontin or lyrica for the burning.

    Many people get some relief with anti depressants like Cymbalta, trazadone, zoloft... but I did not get anything but bad side effects.

    Most folks also take a strong muscle relaxer. Baclofen seems to be used a lot.

    Lidoderm patches help a lot of people, but are expensive. RSD creams help too and are less expensive if ordered from a 90 day mail in.... have your doc call Birds Hill Pharmacy and ask about their RSD cream. It's simple to find them up online. You can have the Doc order theirs.. from then on, you can get it from any compounding pharmacy.

    Many people do take narcotics. They do not help me much, but I have not tried that many different ones. I am trying to stay narcotic free as long as I can. Figure things may get a lot worse in the future, and am saving the big guns for then.

    Hope this helps. THe only other advice I can give is to join one of the big message boards for RSD and ask on there for a Dr. in your area who knows RSD. If you go to a doc who only sees 10 people with it, you are not going to get the best advice ...... even if you have to drive several hours to get a doc who REALLY knows about it for a "for sure" diagnosis, it is worth it. It's not something you want to fool around with. If you don't have it, you want to know. If you DO have it it's VERY important that you get it treated correctly.

    Jules

    I don't get a chance to check this board very often, so check back now and then for my replies, ok?
    [This Message was Edited on 06/29/2006]