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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 12-12-2003, 09:03 PM   #1
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Shelia48 HB User
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Hi Everyone,
MY name is Shelia and my husband has had RSD for 7 years, in his right arm. He has gone through 11 nerve blocks, with no results. The doctor has just prescribed Neurontin for pain. Could someone please tell me if this helps. Now that winter is here, the pain is worse because of the weather changes. He has also started having problems with his left hand and arm because he has to use them in the place of his right,because it just doesn't work too well. If anyone could please give me some ideas to try, it would greatly be appreciated.

Thanks in advance
Shelia48

Last edited by Shelia48; 12-19-2003 at 08:06 PM.

 
Old 12-13-2003, 05:38 AM   #2
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Re: What is the best pain medicine for RSD ?


Hello Shelia...welcome to the Boards. I know you will find it helpful and supportive just as I did when I found this site in September of this year.

I am the main carer for my son who has had RSD for five years. Like your husband he had a minor fracture to his right wrist and developed RSD. He was diagnosed early and despite that it has now travelled to all four limbs and now looks as if it is in his chest. His legs were affected 10 months after the original injury, and his left hand just over a year from the injury. The left hand is less painful, and he compensates by overusing it and now his right shoulder has developed an impingement.

David had one Guanethidine block in his right arm, which he now knows contributed to the spread. He is on Neurontin 4,2000mgs daily. This has certainly helped with the shooting and stabbing pains. He also has Tramadol, Dothiepin and a BP drug. Until recently when he began having chest pains his pain levels would be about 4-5. Now they are higher, and he is having to rest more to deal with the pain. This is not really good because to stop any atrophy he has to keep up on his feet and use his arms as much as he can. He had only initial symptoms fom the Neurontin of feeling spaced out, but these went after about two weeks. Originally he was on Tegretol, but it caused an enzyme in the liver.

I hope you will stay with us Shelia, the others will also add their support to you both.

Hugs,
Edna

 
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Old 12-13-2003, 07:07 PM   #3
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Smile Re: What is the best pain medicine for RSD ?

Hi Shelia and welcome to the board. As Edna said, this is a great place. Everyone is really nice and supportive so feel free to join in whenever you want. I've had RSD for 17 years. I'm sorry I can't help you with your question. I took Neurontin a bunch of years ago and didn't take it for long because of the side-effects. I'm sure somebody will be around soon who can maybe help you with your question. Again, welcome.

Sharon

 
Old 12-13-2003, 07:33 PM   #4
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Re: What is the best pain medicine for RSD ?

Hi Sheila,
Welcome! I'm new to RSD so I can't help you too much. I used to take neurontin for chronic shoulder pain and I hated the side effects. I always felt out of it. For my RSD I'm taking Baclofen which is for neuropathic pain and a muscle relaxant. It's helping me.

That's about all I know.

Take care,
Julie

 
Old 12-13-2003, 07:41 PM   #5
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Re: What is the best pain medicine for RSD ?

Quote:
Originally Posted by ejames4773

Hello Shelia...welcome to the Boards. I know you will find it helpful and supportive just as I did when I found this site in September of this year.

I am the main carer for my son who has had RSD for five years. Like your husband he had a minor fracture to his right wrist and developed RSD. He was diagnosed early and despite that it has now travelled to all four limbs and now looks as if it is in his chest. His legs were affected 10 months after the original injury, and his left hand just over a year from the injury. The left hand is less painful, and he compensates by overusing it and now his right shoulder has developed an impingement.

David had one Guanethidine block in his right arm, which he now knows contributed to the spread. He is on Neurontin 4,2000mgs daily. This has certainly helped with the shooting and stabbing pains. He also has Tramadol, Dothiepin and a BP drug. Until recently when he began having chest pains his pain levels would be about 4-5. Now they are higher, and he is having to rest more to deal with the pain. This is not really good because to stop any atrophy he has to keep up on his feet and use his arms as much as he can. He had only initial symptoms fom the Neurontin of feeling spaced out, but these went after about two weeks. Originally he was on Tegretol, but it caused an enzyme in the liver.

I hope you will stay with us Shelia, the others will also add their support to you both.

Hugs,
Edna

Hello to all ,
This forum is a good read. It is very comforting to hear of others experiences, especially since ours is so new...but feels very old already.
My husband, Ariel was diagnosed just over two months ago. But, the RSD is appearing very aggressive, stage three already. He had shoulder surgery and started experiencing severe pain in the hospital. We are searching many avenues for information, as I'm sure you all have done as well. I'm wondering what type of doctors are most helpful, and what each can offer. We are in a maze of physicians at present...almost overloaded with medical opinion. Our pain management doc is a RSD specialist and the most trusted by us. Thanks for being here.

 
Old 12-13-2003, 08:29 PM   #6
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Smile Re: What is the best pain medicine for RSD ?

Hi Ariel and Anne and welcome to the board. I'm glad you found us. I think it sounds like you have a good doc for RSD already. It seems that most of the docs who "specialize" in RSD are anesthesiologists who are also pain management docs. I'm sorry your husband has this, but I hope he is getting good treatment. There are a few woman on this board right now who have husbands with RSD and Edna has a son with it. I hope you stay around here. It really is a comforting place.

Sharon

 
Old 12-13-2003, 08:32 PM   #7
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destinyevans HB Userdestinyevans HB Userdestinyevans HB User
Re: What is the best pain medicine for RSD ?

Hi,

Finding a med that helps is hard sometimes. It really is trial and error.

It's taken me 3 years to find the right combo that helps me but everyone is different and that certainly makes it a challenge.

Neurotin did nothing for me. For others it is very helpful with burning pain. Usually they start on a low dose and slowly increase to find the right amount for that person.

My combo for now is:

Wellbutrin for depression

Flexeril-muscle relaxant-I only take one at night. It helps me sleep.

Baclofen for me has been a miracle. It is used for MS and it is a relaxant that effects the central nerous system. It stops the spasms, cramps, jabs and jerks.

That is all I take and a Tylenol 3 once and awhile.

Now keep in mind doctors here very rarely will give anything stronger than t3's or percocet. You live with it.

I soak daily in a warm bath with epsom salts, walk everyday, do strenght training every other day, eat only whole foods and hope for the best.

I hope your husband can get some of his pain under control.

Hugs Destiny
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Old 12-13-2003, 09:28 PM   #8
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Shelia48 HB User
Thumbs up Re: What is the best pain medicine for RSD ?

Thank you all so much for the huge welcome to the group. Sometimes it is really hard to cope with being the carer 24-7. I had to quit my job, to say home with him, to make sure he takes his meds correctly for RSD and some other problems. I know the the pain is very difficult to cope with, and I hope that someday they come up with something to cure it.

Thanks everyone,
Shelia48

 
Old 12-15-2003, 05:51 PM   #9
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Ariel65 HB User
Re: What is the best pain medicine for RSD ?

Hello,

My name is Ari'el and my wife is Anne. We have enjoyed and been comforted by so many topics at this forum. If everyone would not mind, I'd like to start slow and have trust developed between us all, as I am new. I have RSD and it is progressing quickly through my body. What I would like to say to everyone reading here that this is a first for me. I suppose logically I'm to know I have RSD yet that subject has not been addressed within my thoughts. So many other issues keep me to busy and quite frankly, afraid to think about this disease. Presently it's easier to be treated like a number, go to every kind of doctor, arrive at each therapy appointment and go through the motions. This does not include all the trouble with workers comp and their uncompassionate ways. So here we sit, myself in pain, my wife not knowing who will help her through this trial and my beautiful children understanding but really not knowing all the details we encounter every day.

So, this is my first post and I'm glad it was written. I hope each one of you, husband or spouse, finds comfort and peace during this trial so you may endure and come out stronger.

Be Well

Ari'el

 
Old 12-15-2003, 08:55 PM   #10
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Lindaa HB User
Re: What is the best pain medicine for RSD ?

Hi,
This RSD is a real bummer. I've had it since August & have tried a lot of drugs I can't tolerate. I take 1200 mg of neurontin per day (my pain doc tried to increase it to 2400mg but it made me too drowsy.) I take 1 1/2 to 3 lortabs per day depending on the amount of pain. My new TENS unit has enabled me to keep it at the lower amount. I also take 10mg of amitriptyline at night for the RSD. My pain doc gave me a prescription for clonidine .1mg per day today. This is supposed to help SMP. I go to hand therapy twice a week. I'm getting the stellage ganglion blocks now. I've had 5 & took a 2 week break for evaluation. I get #6 on Thursday. They have helped me & I hope continue to do so. From what I understand RSD is different among people. You have to try the various drugs to see what you can tolerate. I do have some side effects from the neutontin like ringing in the ears & drowsiness but it does help the pain. I try to look at it as a trade off. I hope you find something that helps.
Best wishes,
Linda

 
Old 12-17-2003, 11:10 AM   #11
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Soxy HB User
Re: What is the best pain medicine for RSD ?

Hi Sheila. Welcome to the forum. I take Topamax and a beta blocker daily. When the pain is really bad I take a Vicodin but not more than 2 or 3 a day. You are lucky to have found a doc who is knowledgeable about this horrible monster. My best to you and your husband. Take care.
__________________
I hope you have a joyful, peaceful and pain tolerable Christmas and New Year.
Dianne

Last edited by Soxy; 12-17-2003 at 11:11 AM.

 
Old 12-17-2003, 06:49 PM   #12
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Horsie Nutt HB User
Re: What is the best pain medicine for RSD ?

Welcome Shelia, Ariel, and Anne. As other people have told you, you've come to the best place for info and to get something off your chest if you need to.

Shelia, I currently take 3,200mgs of neurontin and it most definitely helps. I did have several side effects in the beginning, but they went away for the most part with time.

You were very vague in your post. What kind of doctor is your husband seeing, and why has he only had 11 blocks in 7 years? What kind of problems is he having on his left side now? Do you think his RSD is spreading to the left hand and arm, or is it muscle tiredness due to over-use? You said the doc just put him on neurontin, has he been taking other medication to help with nerve pain? I'm sorry for all of the questions, but we could help you better/more if we knew more of what was/is going on. I have some suggestions you can try further down in this post since you asked.

Anne and Ariel, it is good that you found a doctor that you can trust and feel comfortable with. Is he/she an anesthesiologist that does pain management? Most of us go to a PM that is an anesthesiologist. You guys need your doc to get very aggressive with Ariel's treatment right away since it is advancing so quickly. Since you are less than 3 months into this monster Ariel, you are in the best percentage group for remission. You need to start a series of stellate ganglion blocks, 2 - 3 a week, not once a month like some docs want to do. I had an epidural infusion where I stayed in the hospital for 5 1/2 days, and it helped me tremendously, you might want to look into that. Also, gentle phyical therapy is very important to help prevent muscle atrophy, but the key word is GENTLE! Always remember that you are the ones in charge of your treatment, and you make the final decisions, and if you are not comfortable with something, then don't do it, and if you want something done, then tell you doc that you want to try such and such. It's very important that you get aggressive treatment right away Ariel, before it's too late.

Soaks in a hot bath, with epson salts too, will help. Exercise your limb(s)s at home while soaking, or in the shower, do stretching exercises with your hand and arm. A lot of us have parafin wax machines that are great when the pain is acute. Moist heating pads are helpful, I use the microwavable gel pads the most (you can heat one up, wrap the affected area, and go... you're not stuck to an electrical cord). I LOVE my electrical blanket! It is great to cover up with when relaxing while watching TV (I don't feel comfortable sleeping with it, I used to be a fire dispatcher at one point in time, and am very cautious about things like that, though I do sometimes fall asleep in my chair while watching TV). It keeps your body warm, and keeps the chill and dampness away, and just feels great!

Well, that's all I can think of right now. I'm sure there's others that will have more ideas to help you. oh, depression, anxiety, and RSD go hand in hand, so a lot of us are also on one antidepressat or another. RSD also affects your sleeping patterns (insomnia), so something to help you sleep might be a good idea if this is a problem for you. RSD is different for everyone, so you might not have all the symptoms the next person has and so on...

I hope you all have a pain tolerable evening/night. I'll be keeping you guys in my prayers.

Cathy

 
Old 12-18-2003, 08:25 AM   #13
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Re: What is the best pain medicine for RSD ?

[B]HI, JUST READ THIS AND HAD TO PUT MY TWO CENTS IN. I HAVE HAD RSD SINCE 9-11-91, ORIGINATING FROM SURGERY TO MY LEFT KNEE. I HAD FALLEN , MY KNEE CAP SLIPPED OFF AND I ENDED UP FRACTURING MY TIBIARIGHT AT THE TOP WHERE YOUR KNEE CAP SITS.THE DOCTOR THAT DID THE SURGERY DAMAGED THE PERONEAL NERVE WHICH LEFT ME WITH DROP FOOT AND RSDBESIDES THE OTHER COMPLICATIONS I HAVE HAD. THANKS TO HIM I HAD TO GO ON DISABILITY AND SUFFER WITH THIS HORENDIOUS PAIN FOR THE REST OF MY LIFE.HE TOLD ME ,"IF YOU WERE A PROFESSIONAL ATHELETE , I WOULD DO SOMETHING RIGHT AWAY. BUT SINCE YOU STAY HOME , WE WILL LET TIME TAKE IT'S COURSE". EASY FOR HIM TO SAY. I DID WORK . MY HUSBAND TRAINS RACE HORSES AND I WAS A GROOM AND HELPED HIM WITH THE HORSES.SO MY EASY LIFE AS HE SO WELL SAID I HAD WAS OVER.BECAUSE OF HIM I HAVE HAD TO ENDURE PAIN, TERRIBLE TEST, MEDICINE THAT DON'T WORK AND GIVE YOU THESE SIDE EFFECTS,AND HE NEVER SAID I'M SORRY OR LET ME TRY TO HELP YOU. HIS MAIN CONCERN WAS I WAS NO PROFESSIONAL. BUT I AM HUMAN......
I CHANGED DOCTORS AFTER THAT AND THEY TOLD ME IF HE WOULD HAVE DONE SOMETHING AT THE BEGINNING I MIGHT NOT BE AS BAD AS I AM. THEY WENT IN TRIED TO CLEAN OUT THE PERONEAL NERVE WHICH DIDN'T HELP AS IT WAS TO BAD TO REPAIR . IT WAS LIKE HE HAD CUT IT INTO. ALSO THEY HAD TO RELEASE THE TENDON IN THE BACK OF KY KNEE BECAUSE I COULDN'T STRAIGHTENED OUT MY LEG.I WAS IN THEARPY FOR OVER 2 YEARS WHICH I HAD TO STOP AS IT WAS DAMAGINGTHE KNEE JOINT.
ANYWAY WHAT I AM GETTING TO IS I TAKE PERCOCETTS, MS CONTIN, AND ZOLOFT. BUT WAS ON SO MUCH STUFF I COULDN'T HANDLE THE SIDE AFFECTS AND NOTHING TOOK THE PAIN AWAY. IT ONLY HELPS ME TOLERATE THE PAIN.I NOW GOT TO A PAIN CLINIC AND THEY HAVE TRIED NUMEROUS THINGS FROM DIFFERENT DRUGS, NERVE BLOCKS, FUSION IN IV,S, ACCUPUNCTURE, TEMPARY SPINAL STIMULATOR AND NOTHING HAS WORKED. I WON'T LET THEM DO THE PERMANENT SPINAL STIMULATOR.FOR ME THERE IS NO DRUG THAT WILL TAKE THE PAIN AWAY . I TAKE THE MEDS I TOLD YOU ONLY TO HELP ME TOLERATE THE PAINAND THERE ARE MANY , MANY DAYS I FEEL LIKE JUMPING OFF A BRIDGE CAUSE THE PAIN GETS SO BAD. BUT I DON'T I JUST GO WITH THE PAIN AND IT WILL BE WITH ME THE REST OF MY LIFE.SO IF YOU DO FIND SOMETHING THAT WILL TAKE THE PAIN AWAY PLEASEEEEEEEEEEE LET ME KNOW.THANKS FOR LISTENING . SO HAPPY I FOUND THIS PLACE WITH PEOPLE WHO UNDERSTAND WHAT WE GO THRU.KEEP SEARCHING AND MAYBE YOU WILL FIND SOME RELIEF .... ASHBYHORSES

 
Old 12-18-2003, 10:13 AM   #14
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Horsie Nutt HB User
Re: What is the best pain medicine for RSD ?

Have you tried an Epidural infusion Ashby? it's different than an IV infusion. You could also look into a pain pump.

Cathy

 
Old 12-20-2003, 06:10 PM   #15
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Shelia48 HB User
Thumbs up Re: What is the best pain medicine for RSD ?

Quote:
Originally Posted by Horsie Nutt
Have you tried an Epidural infusion Ashby? it's different than an IV infusion. You could also look into a pain pump.

Cathy
Hi Everyone,
I want to thank each one of you for all the information that you have given me.The neurotin has helped my husband,and hopefully all of you will find something to help also. I would like to wish each of you Happy Holidays.I will try to keep in touch and see how everyone is doing.

Thanks everyone,
Shelia48

 
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