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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD/CRPS sufferer from Killen, AL

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    Old 05-25-2012, 01:33 PM   #1
    anniebell35645
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    RSD/CRPS sufferer from Killen, AL

    Im looking for others near my area. I've been looking for a support group but found none. I've also been trying to find a dr near my area that is knowledgeable about this disease but none..Any help would be great. if ur unable to comment as I was on another person from ala post other than clicking thanks..maybe I just don't know how to comment bk since Im new..any help there would be apprecated as well. thanks

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    Old 05-28-2012, 02:26 PM   #2
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    Re: RSD/CRPS sufferer from Killen, AL

    Hi there -- welcome! I grew up in Alabama, traveled to Florence every other year for swimming. I share your frustration. I live near San Francisco and I am willing to travel for physical therapy. It took me almost three months to get an appt with a PT!

    If you cannot find a specialist easily accessible, ask your primary care physician to coordinate with the specialist you have seen before. Perhaps the specialist could come up with a treatment plan or a list of medications for you to try with the primary. This would cut down on your travel and perhaps get you the care you have been lacking.

    I was also recommended a specific list of vitamins which I figured could be no worse than the other meds: Vitamin C (3-5 grams daily), fish oil, acetyl l-carnitine, and alpha lipoic acid. Please be sure to discuss with your doctor before starting supplements, though.

     
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    Old 06-06-2012, 08:34 PM   #3
    painman2009
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    Re: RSD/CRPS sufferer from Killen, AL

    sorry to see another newbies here in RSD hell.. My best advice is to go into google and type in (RSD CRPS) and research.. see a treatment ask this forum on how it worked for us. just like dx,ing RSD is process of elimination the process to find a good dr is just as hard.. I do know that you are in the middle here on the east shore af a bunch of specialists... you would need to travel though to other states.. good luck

     
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    Old 06-22-2012, 11:07 AM   #4
    anniebell35645
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    Red face Re: RSD/CRPS sufferer from Killen, AL

    Quote:
    Originally Posted by SweetPeainSF View Post
    Hi there -- welcome! I grew up in Alabama, traveled to Florence every other year for swimming. I share your frustration. I live near San Francisco and I am willing to travel for physical therapy. It took me almost three months to get an appt with a PT!

    If you cannot find a specialist easily accessible, ask your primary care physician to coordinate with the specialist you have seen before. Perhaps the specialist could come up with a treatment plan or a list of medications for you to try with the primary. This would cut down on your travel and perhaps get you the care you have been lacking.

    I was also recommended a specific list of vitamins which I figured could be no worse than the other meds: Vitamin C (3-5 grams daily), fish oil, acetyl l-carnitine, and alpha lipoic acid. Please be sure to discuss with your doctor before starting supplements, though.
    Thanks for ur reply. I've explained to my GP that the pain meds aren't helping at all & I had already traveled over an hr away to a pain spec. that did the injections thru the front of neck which only made it worse. That Dr said there was nothing stronger than the pain meds that my GP was already giving me which is Lorcet 10. I also suffer with DDD & it helps some with the back pain but nothing touches the CRPS in my left arm,hand & left ear. I've pleaded with both GP & pain Dr to try me on something else or find a Dr that is knowledgable in CRPS that might be able to help me...no luck. They just shrug their shoulders, sent me on my way! It's getting too much to bear & I really don't know how much more I can stand the Medical profession in my area & ER's ask me what CRPS is...

     
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    Old 06-22-2012, 11:12 AM   #5
    anniebell35645
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    Re: RSD/CRPS sufferer from Killen, AL

    Been searching for over 2 yrs. went undia for almost 3 yrs. suffering & no one seems to care..meaning the health care professionals. many ask what CRPS is & have me to explain it to them & even though they see my left arm & hand swollen, blue, red, tempt changes, skin is peeling off fingers at times...they just shrug & send me on home. I'm tired of suffering & want it to end...I wish I could believe there was help for me but I've searched hard, been vocal, sought help finding none. wrote letters, emails, asking on diff sites looking for others in my area to see who they use, if they've had any luck on finding help but nothing....just pray for me pls

     
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    Old 06-22-2012, 11:06 PM   #6
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    Re: RSD/CRPS sufferer from Killen, AL

    I think doctors could be worried that you are seeking stronger drugs, or maybe there just is nothing stronger. Do you think you might have better success asking for different types of medication?

    For example, I've been put on neurontin, which blocks nerve pain. I've also just started taking nortriptyline, which is hoped to block the pain receptors in the brain. Can you call some of the leading pain management centers? Maybe one of the centers would be willing to consult with your GP?

    You may also have some luck with mirror/box therapy. There is a pretty good video on ******* -- easy to find with some internet searching. The treatment has shown good success in relieving pain in amputees with phantom limb syndrome and stroke victims. The idea is to trick your brain into thinking that the affected limb is okay, by moving the unaffected limb in the mirror. It has little chance of side effects, it might help, and it's almost free! You just need a freestanding mirror.

    The best possible outcome would be to restore function in your hand, and medication may just be one of the tools to help you. I will certainly be sending you thoughts of support, as I am sure others will. Keep us posted; an online support buddy may not be able to sit down and have a cup of coffee with you, but I am happy to keep writing. I have the benefit of having been examined by doctors from both Stanford and the University of California San Francisco, and I am happy to pass along any information I learn.

     
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    Old 09-02-2012, 08:50 PM   #7
    anniebell35645
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    Re: RSD/CRPS sufferer from Killen, AL

    SweetPeainSF, I had several of the SGB, tried cymbalta(caused heart to race & terrible headache),Lyrica(helped with pain but blistered only left side of tongue) so my Dr told me not to take it, neurotin( no relief) hydrocodone 10mg(didn't help), I was told there was nothing else to try. I've never had an addiction problem, never had any trouble with the law, only 2 tickets in my life & I'll soon be 46. I worked hard since I was 13. Became a deaf interpreter at my church then at the public school & worked thru chronic migraines, D.D.D (bad disk in back & neck) as well as a history of peptic ulcers since the age of 12 yrs old. I'm disabled now & don't smoke, drink or ever abused my meds. So I don't understand why there hasn't been anything tried that is stronger than hydrocodone & why I was told there was nothing else stronger available by a pain management Dr when sitting in his office an elderly man came in with complaints that his wife at home could barely function from the oxycodone they give her. I don't know what her health problem's were but I know mine as well as they know & have been confirmed by 4 other Dr's, at Vanderbilt in Nashville, Tn,Birmingham, Al, Huntsville, Al, Russellville, Al. Many make the assumption that I am drug seeking because I'm suffering and want my pain under control so I can have some quality of life...trying different whatever they need to until the right med is found to at least ease it enough that I can half way deal it to sleep. When a person's in chronic, uncontrollable pain & aren't able to sleep their body isn't able to repair it's self as God designed it too. Thanks for your reply & ask that you lift me up in ur prayers. There's nothing it seems no one can or will do...one day God will take me out of this world & I will be given a new body & be in no more pain. I long for that day! good night & may God ease those that suffer from this disease until a cure is found cause many Dr's don't seem to care if a person is suffering when an animal gets more compassion..Good night all

     
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    Old 09-02-2012, 10:36 PM   #8
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    Re: RSD/CRPS sufferer from Killen, AL

    I'm sorry that you're suffering so much. Have you tried anything other than medication? It must be awful to have limited use of your hand, with your ASL interpretation.

    Are there any university physical therapy sites near you? I've been going to physical therapy and working on slowly desensitizing my foot. Have you had any nerve root blocks in the past? Since my second lumbar sympathetic block, my symptoms have been markedly decreased.

    I'm also taking Vitamin C (3 grams per day), an Omega-3 supplement and alpha lipoic acid. Each of these supplements is hoped to help nerves heal and react appropriately to stimulus. CRPS/RSD is mostly the nerves going haywire -- if your nerves heal, the skin/hair/nail/muscle issues often abate, as well.

    I found a pair of shoes that really helps me. They feel like my feet are encased in gel. I wonder if, and this is going to sound weird, you could try making a big bowl of Jello and sticking your hand in it. If you are sensitive to cold, then you would it to warm to room temperature. But, the feeling of compression really helps my foot, and if the Jello doesn't hurt, it might just help.

     
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    Old 09-03-2012, 11:47 AM   #9
    anniebell35645
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    Re: RSD/CRPS sufferer from Killen, AL

    Yes, SGB is nerve blocks. I had 7 of them through the front of my neck on the left side of my vocal box.They made it worse. I take MSM with vitamin C also magnesium, zinc, garlic oil, as well as many other suppliments & try & eat a diet with fresh fruits & vegs cokking in olive oil, ect. I'm not able to interpreter anymore nor am I able to work doing anything now. Since I'm in constant, uncontrollable pain I can't do much of anything. Im on a fixed income so bi therapy, acupuncture, homepathy, anything like that I can't afford to try. I take a lot of Epsom salt baths. Thanks for suggesting the Jello. I stopped using the ice packs anywhere cause I was told it would cause the CRPS to spread. Maybe God will send my body healing soon. Thanks & pray for u as well

     
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    Old 09-03-2012, 08:37 PM   #10
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    Re: RSD/CRPS sufferer from Killen, AL

    I mentioned those specific supplements, because they were recommended by Stanford pain management to help the nerves heal. From everything that I have read about CRPS/RSD, the problem is really a short-circuit within the nerves, sending signals to your brain that the area hurts and sending signals to the limb that it is injured. So, when you look at the area, it has all the symptoms of injury and it feels like it is injured. If you can break the cycle, the pain and symptoms go away.

    For some, the nerve blocks reset the nerves, much like restarting a stuck computer. The gradual desensitization process is another method to gain relief, by sending positive reinforcement to your brain that your limb is okay. I found that compressive sensations -- like a gel feeling -- have been the most helpful with stopping the pain and sending those positive signals to the brain. My PT has confirmed that her other CRPS patients find compression soothing. I hope that you find some relief.

    By the way, on four mornings after my last sympathetic nerve block, I had horrible, horrible shooting pains, which made it almost impossible to bear any weight on my foot. I absolutely understand what sufferers with more severe symptoms are going through. The pain was short-lived and was only when I first got out of bed. The PT suggested lightly massaging the foot before trying to get out of bed, to warm up the nerves and let my brain know all of the tissues within my foot were okay. I tried that the next morning and the symptoms were worse but the pain dissipated more quickly. Then, I was okay the next morning. I still get a little bit of a prickly sensation but I don't notice myself standing funny anymore. I worry that once I taper off the meds the symptoms will increase, but I'll deal with that when I get there.

    Sending you all of the best thoughts possible.

     
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    Old 06-18-2013, 10:24 AM   #11
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    Re: RSD/CRPS sufferer from Killen, AL

    Hi, I just came across your post and wonder if you have found any new RSD care in your area. I am considering a move to the Florence area but am concerned with medical support for my daughter who has RSD. Have you looked at Huntsville or Birmingham? We currently live in Texas and have had to resort to traveling 3 hours to Houston. Also, I came across a listing of a Dr. Bell in Huntsville that works with nerve disorders. Are you familiar with him? Any information would be greatly appreciated. Thanks!

     
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    Old 06-18-2013, 07:26 PM   #12
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    Re: RSD/CRPS sufferer from Killen, AL

    SweetPea, I was wondering what kind of shoes you have found. I had to resort to diabetic shoes with one being a size and a half larger to give my bad foot less pressure. Also wear only one kind of socks that are super soft so have no friction on my foot. Thanks in advance for the info.

     
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