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CRPS and RSD Information - Can't go on living like this !

tmichaelroche
1 Recommendation

Does anyone suffer from these conditions? I was told that exercise and physical therapy would help aliveate some of the pain. How in the HEL_ am I supposed to exercise and take therapy when I can't even walk or sit or stand for more than 15 minutes. If I try to squeeze in 15 minutes of exercise before the curse of pain kicks in, forget it, I am on the floor in agony from the pain. Meds don't help, heat doesn't help, ice pack doesn't help. I am so tired of living like this! Maybe stem cell research will come up with some way to fix the problem. I can't go on living this way. A support system like INSPIRE helps, but even a support system doesn't do the trick. I am no longer the same person, father, husband, brother, uncle, neighbor or friend. I feel like I am all alone and my life is over. What else can I do.

Explore topics in this discussion:

Exercise Amitriptyline Surgery Zanaflex Back pain Soma Baclofen Vicodin Paxil Oxycodone Crestor Norvasc Benicar Stress Gabapentin Tricor Chiari malformation Physical therapy Multiple sclerosis Oxycontin Suicide Pain Neurontin Lyrica

10 replies

CountItAllJoy

Its best to go to an inpatient clinic
I will be quite possibly being admitted to one this fall, ocne all the legistics fall into place for my diagnosis. Its very painful, I can't walk without a cane and get fatigued walking up a quarter of a flight of stairs, but I know that where there is a will there is a way! This is something that could help you, why not give it a go with all optimism!

I dont know how its going to work either for me. Not a clue and its definitely worrying at times! But I've heard stories of people in our kinds of pain making a turn around and definitely want to try it.

NORDGeneticCounselor

The following organization is a good resource for information and support for RDS/CRPS:

http://www.rsds.org/2/what_is_rsd_crps/index.html

rwatchorn

Michae,
Hang in there. I have crpsII of my axila and triceps due to a botched surgery. It is tough at first. Narcs never helped me. Waste of money. Lyrica seemed ok to reduce the pain but my vision was blurred on it to the point I could not read to work and my cognitive function decreased. Was on high dose Neurontin for a couple years. Have weaned off that as well. What I found most helpful was aquatics. I rehabed myself at the ymca every day for 90 days in a row. Baby steps at first. Yes it was tough getting there, getting into the water when it was January etc. But I stuck with it and I am typing to u right now. I could not have done that 4-6 months out from surgery. Do I still have pain. Yep. I do. I have pain when I Overuse my arm like I did two weeks ago dragging a bag of potting soil. Was in agony for four days. It is real pain. It does get better. Someone told me aftr five years the nerves "burn themselves out". Well I have three to go. And I hope they are right. It can make and keep you depressed. Dont allow that. It does help to have people that understand this complex disease. Hey on top of my crps I was just diagnosed with CPPD. Another disease with no CURE!! And crappy treatment. So I am here to email if you like. A fellow pain person. Also a nurse that currently works 40 hous a week. Yes still working. RW

tmichaelroche

Thank you , Thank you, Thank you!!
My problem is in my right lower back and leg. Anything can set off the pain and I mean horrible pain. My wife has watched me cry and suffer for many years. I had so much hope for the 4th surgery, only to be confronted with this.Some days I feel pretty good and I would go to the grocery store with my wife, only to suffer and I mean suffer in horrible pain. I feel it's a curse......

rwatchorn

I don't know if it is a curse. If it is then I have a double whammy with this CPPD and CRPS. It is what it is. A horrible neuropathic condition. Obviously 4 surgeries out and things have not gotten better. The absolute worst thing to do with CRPS is more surgery. At least until the pain is in check. The earlier emailer might be correct in recommending an in=patient pain management facility. Course that takes Money!! And this condition is a robber of that. Who diagnosed your crps and how long do your think you have had it. I think I had crps prior to my surgery only to have more surgery and have things go terribly wrong. Have your tried any of the neuropathic meds? Lyrica? Neurontin? Remember, narcs dont work for this disease as it is primarily a nerve issue. Now if you are having mechanical back pain as well, they may have an effect on that. Have you had a paravetebral block? Again, need money, insurance, Yes to start moving again. You will atrophy if you dont start using your muscles. The water will afford less stress on your joints. But you have to stick with it. Stand on the side of the pool and start doing leg lifts. Start with your good leg. Do some reps then move to your affected leg. If you can only get it up half way then do that for 10-12 reps. Try walking in the pool. This will help build resistance. I found I did better in a pool 84 degrees or higher. Cold pools made my crps unhappy(er). I am a post T1 T2 neurectomy. (those are thoracic nerves that innervate your triceps and axilla). I essentially lost the use of my dominant arm. Do I still struggle? Yes. But i can tell you the pool helped me the most and I still try and swim, (yes I am swimming again now,) every day. Do you have a pain doc? You need someone who knows crps and knows the meds. I hope we aren't cursed. When I really feel pitiful and sorry for myself and cant take it anymore I will read about Job in the bible. ( not a huge bible reader, and could use a bit more), Job kept his faith. You keep yours too. R

LifeVision

I wish I could erase the present suffering that you're going through. I came across the following young lady's blog through a friend who's been dealing with the same type of torment for the past 3 to 4 years. Maybe it will help. Try to stay encouraged.

http://crps-rsd-a-better-life.blogspot.com/2008/12/only-as-high-as-i-reach- can-i-grow-only.html

pie830s

I have Arnold Chiari malformation and I do have alot of pain as well. I will tell you that until I went to my pain management therapy I fell like the world was over. The trick is to do some kind of water therapy on a regular basics. I take oxycodone, gabapentin, baclofen, amitriptyline and ect... Which none work to me. When she told me I had to do water therapy. I was like your out of your mine, but I did it. Thank GOD. Yes I do still have pain. Yes you are a no longer the same person. It the pain that changes you. You will be able to regain most of your life back, just don,t over do it. Remember to pray . Its good for you mentally and phyically

jeisea

If 15 minutes of exercise causes your symptoms to flare then 15 minutes is too much. It ttook me a long time to realize how much was too much. There's a book by David Butler called "explain Pain". In the book they talk about graded exposure. You need to do a very little and the next time may be only 20seconds more. Each time very little more. Be mindful of how your body feels. Breathe in and out with a long out breath. Do this for 5 minutes several times a day. This calms the sympathetic nervous system. Pain puts our body under stress let alone all the other stresses in life.

Someone left a comment with a link to my blog crps-rsd-a-better-life. If you click on the tag "list" you'll see a long list of some things that have helped me. I have had whole body crps since 1998. I have had remission twice in just over 12 months. I am working towards remission again after an accident last week caused it all to return. Please don't lose heart.

jeisea

Thank you for leaving my link. I made a video (on Utube - mirror therapy for foot - or my blog) about how I'm doing mirror therapy at the moment. No one showed me what to do. I read about the research and just guessed and then trial and error. It's worked and continues to work. Before I did mirror therapy last week I couldn't move my toes or foot. After a short time in front of the mirror I could do both and the pain was more bearable. It's 6 days since I had the accident and I can walk now.

Hope this helps someone.

tmichaelroche

I really appreciate everyone's comments, suggestions and inspiration. This is a great web site.

I am severely depressed. My Psychologist (have been with him since 1994) was informed of my suicidal thoughts during my appointment (wife was with me / I'm not hiding my thoughts from her or my doctors) and of course he "upped" my medicine (Paxil) to the point where I am currently taking 60 mg daily. I am like a zombie from the pain and all the medications. ( my medicines : Paxil, Methylphenadate, Tricor, Crestor, Niaspan, Zanaflex, Soma, HP Vicodin, 30 mg Oxycontin, Lyrica, Benicar HCT, Norvasc and Clonapam) .. I have an Internal Med Doctor, Psychologist, Pain Management Doctor, Neurologist and a Neurosurgeon. Along with CRPS they have now decided to perform additional tests to confirm their collective diagnosis of Multiple Sclerosis. All doctors monitor all these medicines and communicate with one another on a monthly basis. They collectively agree that the medications are necessary and that they have nothing to do with any symptoms (side effects). The only problem I have with all the doctors and medications is that they have little benefit. If their goal is to turn me into a "zombie" and make me poorer than their goals have been achieved. A couple of your replies mentioned "in patient" pain management control. I am reluctant to this process for apparent reasons. Seems that I am taking too many meds and have had 4 spinal surgeries and more types of spinal injections / procedures than I can remember with no success. Thus my thoughts of suicide. Please don't judge me for thinking this way. I certainly would never harm myself but my options are limited. The doctors are specialists and the Neurologist and Neurosurgeon are Ivy League educated. Many of my prior tests have confirmed nerve scarring which indicates MS nerve damage. I am to the point where I have been isolating myself and withdrawing from daily life activities. Nightmares are getting worse (they tell me that pain causes them).
I have learned to love disabled people. I no longer judge others with disabilities. If I could only learn to love myself. I am trying to stop worrying how others judge me. The human condition is strange at best. Why the hell should I worry what others' think of me. My wife has helped me a great deal with this and my embarassment is slowly fading.
I have done a lot towards "growing up" since my last surgery (June '09) , now 52 years old and faced with all these issues. My soul remains strong and my goal is to heal & deal with my body, my mind and my soul.
If anyone wants to privately share their disabilities, soul and life struggles with me, I would be proud to hear from each of you. By the way, before I go, my doctor suggested some music therapy to ease my pain and it is helping. Give it a try. It just might INSPIRE you. I do have a great deal to be thankful for, especially my wife of 28 years and my daughter and son. Let the people in your life know how much you love them.

My thoughts and prayers are with each and eveyone of you.

Courage is a special kind of knowledge; the knowledge of how to fear what ought to be feared, and how not to fear what ought not to be feared. From this knowledge comes an inner strength that subconsciously INSPIRES us to push on in the face of great difficulty. What can seem impossible is often possible with courage.

The scars you acquire by exercising courage will never make you feel inferior.

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