Hi,
My name is Mary. My husband was dx with RSD/CRPS in August of 2009, so even though we are new to this, I can tell it is going to be a battle.
He had shoulder surgery in May of 2009, therapy, then RSD in his left hand, arm, and shoulder. It has since moved into his chest and back. Now it is going onto his right shoulder, arm, and hand. He cannot lay down, has been sleeping in an office chair sitting straight up for the past year. He cannot even sit in a recliner because it puts pressure on his back.

We live in Ohio, south of Canton. We have already been to different doctors (confirmed by 5 Dr's) tried a ganglien block which they could not do because he cannot lie flat. Did a interscalien block which made it worse, electrical blocks of some kind, which made it worse, Went to a RSD clinic at Univ. Hosp in Cleveland, but after 4 visits told him they cannot help him because he cannot lay down ( which he told the Dr. on the first visit). He now has edema of both legs, and stasis ulcers of both. Our attorney is supposed to be working on connecting this to the RSD for Insurance (comp) purposes.
We are trying to find someone to help. Any suggestions? This clinic just gives him vicodin 10's and says come back when it needs refilled.

Hi Mary, I can understand your worry overy your husband's health. It is common for RSD to spread-I have it full body and internally-15 years. There are other medications that help with nerve pain so a person can minimize vicodin. I also take vicodin. Anxiety is part of RSD as it affect the Limbic part of brain I take lorazepam for anxiety, thus it calms me down and lessens pain.
Also depression is a part of RSD, Cymbalta also works on nerve pain and helps with sleep. Insomnia is huge for RSD and unless we get good restorative sleep, that increaases our pain. My Dr. who is a internist, neurologist, psychiatrist, pharmacologist, and others areas, does trial studies for pharmaceutical companies and teaches. Seroquel XR -he did a 200 person trial study for fibromyalgia and found it worked well for sleep aid. He put me in the study as my ambien cr quit working completely. Seroquel 150 mg. helps me sleep 10 hours a night straight. I am so grateful and . RSD is an autonomic condition so our blood pressure is affected - I took two meds for that. I check my BP because if it gets too low, we can pass out, which has happened to me.
RSD affects our immune system, involuntary organs like the heart, lungs, bladder, kidneys etc. Also affects our body temperature, thus the sweating and even ice cold. Most of us do best in warm dry states. Many have moved away from the rainey, cold, snow states to the warm dry climate.
Hope the best for you and your husband Mary. My Dr. has been researching ketamine and feels there is progress in that area for us. Also HBOT has beneficial to some.
I live in Scottsdale,AZ and love the weather except for the heat in summer. I just stay inside for the most part.
Take care and hope the best for you both. Dr. Swartzman is a well know RSD Dr. He was among the trial Drs. here in Scottsdale at the Mayo Clinic for trial of ketamine. He has excellent reputation. One of my girlfriends was an assistant to the 5 Drs. involved in the trial. I'll write more, as my Dr. is researching more on ketamine. He also has two new clinics with HBOT in both of them. Good thoughts to both of you, one of your new friends, loretta with soft hugs

I had no luck at the University Hospital in Denver. To me they are a learning hospital and use people for guenna pigs until they figure out they can't learn from us. I went up there about 25 times and got passed around from Dr. to Dr. until I figured out they didn't have a clue.

I slept in a recliner for about 3 years. The first 8 years with RSD was a nightmare. I actually think I was dealing with it since 1987 after an etopic pregnancy. Just wasn't diagnosed until around 98 after TOS surgery.
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My best help has come from my PCP and PA. I never had any luck with PM Drs or Neurologist. Some do though. I think with Drs. it's the luck of the draw. You find that right one and you are extremely lucky. You just keep looking until you do.

I have had blocks, PT, triggerpoint injections and take Methadone for the pain and use lidocaine patches.

From what I see on here in reading what everyone goes through, the road doesn't seem to get shorter or easier.

If you stick around you will get some good help. Also too, don't let the desperation that comes with this cause you and your husband to make rash decisions on tteatments, research them first and also don't think you have the perfect Dr. just because you like him or her. Keep an open mind at all times.

Ada

Alan has a new PM Doc. He took him off vicodin and all other meds he was on. He then put him on Methadone, Lyrica, and if we can get wc to approve it, clonidine patches. So far - it is not an approved med. He then wants to put in a SCS.
I do realize that some things work better with some people than others, but from what I read here, people are having much better success with outpatient ketamine treatments or even HBOT than SCS. Although I'm not sure WC would approve HBOT in Ohio.
The more I read on treatments and options, it seems, I become more confused! I really think this Group is the best I have read though! Alan won't make a decision on treatments until I research them for him and make suggestions. Then he decides in favor of what I suggest. I am just so afraid of making the wrong choice.

You deserve commendations! You are working for your husband, as I had two wives, who only took advantage of my weakness....

Anyway, I've had RSD since 83. I'm a Master Plumber and mostly businessperson. I was about the first person to break through the insurance industries' 'top tier' of payments for rsd. (I met the adjuster, who had to write my check), I also had Philly's best attorney, and doctors. Dr Schwartzman.

Anyway, I've been on methadone for about 20 years. Valium. an anti inflammatory. (Now I find Aleve to be as good as any, I was on Torodal for years, then they pulled that drug, as they find it not acceptable for more than a week), Bextra, etc. Aleve will kick that methadone a bit on those rainy days!
I take also, Cymbalta. Important.
I take also, a muscle relaxer, to help sleep.
I use a CPap machine. (Sleep issues come naturally with rsd) Watch for TOS! (Thoracic Outlet Syndrome), very likely in your husband's case.

Neck massager, heating pads, ice packs in the freezer,, (which are always covered in towels and for migraines only).

I've got a bastion of lines of defense. But, they all fail occasionally, and I just crash and burn!

If I have one 'decent' day, I crash for two.

This disease, is a monstrous demon, and be sure you have the Best Doctors, / lawyer. Ask the tough questions!

Doctors; How many RSD patients have you treated?

Lawyer: How many RSD patients have you represented, and the outcome? Can I have their names / number?

DO THIS!

Your families future, depends on it!

PM Me if you like.....


Pete

Methadone has helped a lot of RSDers. For me it was a miracle drug when my RSD first spread to my head. NOTHING else worked to get rid of the hideous nerve pain like it! I was truly a mess!!

Clonodine comes in pill form as well as the patch. I had trouble with the patches giving me a rash, and switched to the pill. The pills are also cheaper and might get approved more quickly by your insurance company.

Your concern regarding the SCS is warranted. Many times it causes MORE spread and infection. But for some it is awesome. Everyone is different. Check out the SCS and Pain Pump forum here on NeuroTalk - the link is available on the top of the page (4-5 lines down).

Try to find the very best lawyer you can to represent you for Worker's Comp purposes. I hurt myself carrying a really heavy workbag in Nov 2006 (I'm a CPA) and it would have been impossible for me to navigate my way around the healthcare system without a reputable lawyer to help me. My RSD also started in my shoulder.

Have you checked out the RSDSA.org website? There is a ton of really good info available, especially the research articles.

I truly wish you and your husband the best. I am sorry that he is suffering so badly - hopefully the change in meds will help him. Is PT an option?

XOXOX Sandy

Thanks for all the info and replys.
Alan is not a candidate for PT at this time. He has no ROM with his left arm and it hurts too bad when he moves it. The only way he can get any relief is to hold it very still and have it propped on a pillow.
We already have a lawyer - but we hired her before the RSD showed up. She says she has exp. with RSD, but I really don't think she has. I am the one always telling her what she should do and what to ask for, etc. We can't get rid of her because we would have to pay her. I told her today that we are really not convinced that we want hs SCS, and asked her to look into the Ketamine.
Thanks for the info on the clonidine. It doesnt look like WC is going to approve the patches. So at this time, itis Methadone and Lyrica. Some help, but not any better than vicodin, (maybe bot as good), at this time.

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You needn't worry about 'firing' an attorney, they're sure to get their 'peice', in the end, but YOU should negotiate that! (boy, do I have stories of that)!

(As I said, I'm (was) a master plumber, of all the tradesmen I know, and Lawyers are certainly a 'trade', as well as doctors, it is LAWYERS who don't require liability (malpractice) insurance!!!! Who wrote these laws? And DO NOT EVER HIRE AN ATTORNEY WHO DOESN''T CARRY INSURANCE!!!!
You have the right to ask for a 'Certificate of Insurance' from him/her!! Do It!
Or, you'll lose EVERYTHING, as I'm about to, three generations of my family's legacy, that was to be passed to my children! Now, they don't speak to me, even though, I raised them alone, w/ rsd!
Did I mention, that I have little respect for about 95% of lawyers?

Just don't make a move, until you've got the right one, and yes, you can ask your attorney the 'tough' questions, and record it, so long as they know. (If they won't permit it, lose them fast!).
Ask exactly what kind of experience she has with RSD? (Did she perchance once hear of it?) A lawyer is taught to lie that way!

As for the meds, it's sort of obvious, but when we're ill, we tend to go with "my doctor said' to take this, but we must also think. Is this crap helping me, or not?
I don't really see Lyrica helping on top of methadone. But, I'm not your husband.
If he feels some relief, good.
He might try lidocaine patch on his bad arm.
Or a mixed emulsion cream, that is made for him.

Please, Keep in touch?

You can PM me if you feel up to it....
since 83, and LOTS of crappy lawyers, I've got some experience.

(BTW, we have a wonderful gentlemen here, who is an attorney with RSD. A very fine man).


Pete
asb

Hi. You are a very kind and caring wife to help your husband so much. Now this is just my opinion but I think the final choice about treatment should be his. I know my mom did so much research and encouraged me on certain treatments but she said I needed to make the final choice. She said she would feel so bad if something went wrong with the treatment and she chose that. Obviously it would not be hurt falt or would it be your's with your husband. I do feel though for the overall relationship it is better for the rsd suffer to decide.
On a side note I was suggested a scs but after my block and lidocaine infusion increased my pain level the scs was put on hold due to the fear it would as well. I bring this up because you stated your husbands block increased pain. For the Scs I know a few people who have had benefits but also some who have had more problems. It is a hard choice I do know.
Sometimes for meds adjusting the doses can help and also time