CRPS/RSD

[Jean H.]

Jean
my kids were 14 and 9, they would tell me were they were going and I would freak out because I could not find them, I did not remember even seeing them, thank god my husband was working 3rd shift at this time, the kids would tell him just in case mom was going to be a weirdo that day....Jean

[Joan J.]

Thanks Jean, I jsut ordered the book. I don't do caffiene, or alcohol, or soda, I don't smoke, I even cut back on chocolate! I feel I'm so freakin' good and still feel lousy! So it will be good to read what this book has to say! I do struggle with vitamins, never know what to take, how much to spend, if they are even dissolving in my gut!
But it's a new day! So here I go!!
Joan

[Jean H.]

I don't drink, glass of wine here and there , soda maybe a 2 cans a month, I do smoke but I am trying to quit, down to 1 carton a month. but I have found that state of mind is really important, I don`t take myself so seriously anymore, or anything else I find humor in anything that goes wrong.
I hope this book helps, at the very least It will prove you not crazy or a hypochondriac.......Jean

[Jean H.]

Eileen
I was doing some checking on this, my brother had a nerve block to stop pain. I checked out 1 web site and they said this

How Is Complex Regional Pain Syndrome Treated?
Since there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and anti-seizure drugs.

Other treatments include:

Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.
Reviewed by the doctors at The Cleveland Clinic Pain Management Department.
I hope things go well for you...Jean

[Jean H.]

I can really relate to Eileens,Joans,Sharon,and others that I can't remember off the bat right now,some times I have a short memory,other days it is better. I was diagnosed with fybromyalgia about 1o years ago. I was on different meds,I changed many of them because I felt some caused a deep depression.Some of the meds you are in your own little world and it didn't matter if anyone was apart of that world. I coped with these meds for a year or two. I believe the different meds caused my stomach alsar. I finally found a med that helped with sleep.The meds only made me druggy all the time feeling no pain,so I coped like a zombie and with all this it led to forgetting,a short memory. I finally said meds were making me worse and truth they were. I learnt that alot of my fybromyalgia was arthritis problems.Alot I would have to learn to live with to get ahold of my life. I found a med that I take now to help for sleep,sleep apnea is no fun. After I began taking this med I felt rested the following day with out any druggyness. Good sleep helps heal alot. When I was taking this med I was druggie alot I couldn't finish sentences or find words I wanted, my sweet Dh would for me.Over time I got my life back. I'm get tired from the arthritis,I ache and have pains, I just learnt my limitations through the illness and once this happened it has helped me alot. My thought was I'm depressed because I have these aches and pains but then I got more depressed with medications.I wasn't even living I was letting the meds take control over my life. I think once I learnt my limitations I got a new life,not as active as I would like to be but put me in a chair at my sewing machine I can bust the moves!lol. Not good at standing long periods. To this day,I chalk it all up to age-ing,ware and tear over the years. I forgot having fybromyalgia really.
I hope this battle can be beat by all. Much Love to All,Hugzzz,Kathy

[Jean H.]

Can you imagine what the men in our lives would be like if they were going through things like this? :lol: I don't even want to imagine!
I can't stress enough that exercise is very important. I have found that yoga and tai chi work very well, because your exertions/stretching are regulated by you. Both believe in honouring your own body.
I have a book that is written by a Dr. with fibro called the "Fibromyalgia Advocate" by Devin J. Starlanyl, M.D.. She has other books on the same subject as well. She describes what vitamins to take and all kinds of things you need to know. And what you should be telling your dr and dentist etc.
I agree that your state of mind is very important! If you are depressed any pains you feel will be magnified and/or caused by the depression. I take a low douse of amitripaline (sp) (20mg) to help me achieve REM. Achieving good sleep is very important because that is when your body heals itself.
I was on an anti-depressant at regular strength for years, was feeling a heck of a lot better, so am trying without. Seems ok so far.
I made the decision some time back to deal with what I have with a straight forward honesty and be thankful that it isn't something that can't be dealt with.

Jean almost over her cold in Windsor ON

P.S. Hang in there ladies!!!!

[Jean H.]

Jean
You said it, most men I know prick there finger and its an emergency, However I really lucked out on my 2nd husband He truly is wonderful, he never get mad or upset takes everything in stride, will do anything for me and has never once said anything negative to me about all the aches and pains I have, even before we dated we were friends and I had a hysterectomy, and he came over and did dishes, went shopping for me, just a great guy.
When he was at work he cut the tip of his finger off went to the hospital by cab then went back to work never missed 1 day, 2 wks later another guy did the same thing off work 6 wks. ....
Jean in Wisconsin, and snowing again, but I like it

[Eileen K.]

Eileen
I was doing some checking on this, my brother had a nerve block to stop pain. I checked out 1 web site and they said this

How Is Complex Regional Pain Syndrome Treated?
Since there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and anti-seizure drugs.

Other treatments include:

Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.
Reviewed by the doctors at The Cleveland Clinic Pain Management Department.
I hope things go well for you...Jean

Jean,
I'm going for a 3 phase bone scan on Tuesday because the insurance company is disputing the RSD. My doctor is starting me on Fentanyl patches this week. We've decided to not go with the nerve block because they'd have to do it in my neck, close to the spine and the voice box. And we're holding off on the spinal cord stimulator as a last resort because I don't want to be cut into again. I've had 2 neck surgeries and I'm not ready for another one.

Wish me luck for Tuesday-they have to inject radioactive isotopes into me. Fun, huh?
Eileen

[Joan J.]

Eileen, you will be in my prayers. I prayed for all of you at mass tonight. I hope someone out there is feeling better! I had a bone scan last year, rheumatologist didn't believe I had fibromyalgia and chronic fatigue he decided it was RA and gave me tons of medication (which made me sick!) and tests, and bone scan. Of course everything came back normal, (as my doctor and I used to say I was the sickest normal person ever!) as my doctor checked for RA long ago, and when I went back the next month for the follow up this doctor looked at me and said "oh I guess I diagnosed you wrong, you don't have RA" I went back one more time and that was it! Yes, I had the radiation juice put in me and had to sit around for an hour or so, be sure to bring a book while you're waiting and then take a short snooze while you're in the machine!
Keep us posted!
Joan

[Mary K.]

{{{{ Eileen}}}}

[Mary K.]

Eileen
Wishing you the very best here. I will be praying you get great treatment and that it takes away all the pain.
Love & Hugzzz,Kathy

[Mary K.]

Eileen I hope and pray everything gose ok with you I know what it is like when they cann not find a way to help you. I have been taking a mediction for my lupus for years and Christmas day I got sick when I took it so the next day when it happened again I call the Dr. they said to stop it I go in on the 29 th so we will see what happens Happy

[Joan J.]

Good luck Happy! Going to mass now, you all will be in prayer
Joan

[Joan J.]

Good luck Eileen. It really is a shame the insurance companies call the shots these days. Doctors really can't use those years of training without being second guessed by some pencil pusher at the insurance company. Sandi in FL

[Joan J.]

Eileen, I am so sorry that you are having to deal with this. I can't even imagine what it is like for you as well as everyone else who has mentioned their difficulties. My thoughts and prayers are with all of you.