Help! I really need some advice. My arms have gotten so weak and the padding in my elbows is totally gone- I can not rest my elbows on a table or any hard surface. Now this is happening to my knees and I an so scared that I may not be able to walk soon. They feel so tight. I have tried some muscle relaxers like Roboxin which is ok , Baclofen- I could not tolerate. I want to make this stop or slow down. Is there any procedure that could help? I have had Ketamine infusions HBOT and nerve blocks but my RSD has spread so much that nothing seems to help. My knees mirror each other as do my elbows. This is suck torture. Started taking vicodin which i never did.

Help- I feel such despair at this time - I dont know what to do!

Debbie

Hi Debbie,

I'm sorry you are having these symptoms. When RSD was discovered (4 years after I got RSD) one of tests was a nuclear med bone test. It showed bone loss. Have you had any bone denesity tests on your elbows and knees? I've had RSD 12 years-full body now and my elbows are twisted. Also have fibromyalgia, which a lot of us have both RSD and Fibro.
Have you seen a rheumatologist? or orthopedic DR?
I know it's one of my fears not to stay mobile. When my toes started to curl up and not touch the floor, my Dr. gave me exercises to do dailey. I did them every morning in a warm bath, and dailey in the swimming pool. A few months later they were back touch the floor. I believe in stretching and toning of muscles, even if it isn't what I used to do. I used to play tennis 5 days a week, water ski, snow ski, walk, run, swim, aerobics, etc. Water exercises, needs to be 86 degrees or warmer. are really good for us to strengthen and keep mobile.
Are you with a physical therapist? I had two frozen shoulder and got both back thru a LOT of PT and massage therapy. Massage therapy really excelled my range of motion. I wasn't so fortunate when my hand froze up, Didn't get started soon enough, that's when I found out I had RSD. Got partial range of motion , but partially crippled. Sounds like you might need to see a specialist to help you. Isn't there meds to help build bone density and vitamins and certain foods. I work out with 1 lb. weights. not too long, but enough to keep strength. I'm sure others will have some ideas what they do. Don't give up!!!!
Do you have a good Dr. that you like? Take care of yourself, Loretta

Thanks for your response. I do go swimming several times a week but it is getter harder and harder. I also get massage therapy. I have been to a Rhematoid doc and he couldn't help me....I took vicodine last night but was hung over today. Today I took roboxin which helped with the elbows but did not touch the knees.. I hate this disease and it is just not fair!!! I guess eventually it will hit all my joints?

Thanks again

Debbie








I'm sorry you are having these symptoms. When RSD was discovered (4 years after I got RSD) one of tests was a nuclear med bone test. It showed bone loss. Have you had any bone denesity tests on your elbows and knees? I've had RSD 12 years-full body now and my elbows are twisted. Also have fibromyalgia, which a lot of us have both RSD and Fibro.
Have you seen a rheumatologist? or orthopedic DR?
I know it's one of my fears not to stay mobile. When my toes started to curl up and not touch the floor, my Dr. gave me exercises to do dailey. I did them every morning in a warm bath, and dailey in the swimming pool. A few months later they were back touch the floor. I believe in stretching and toning of muscles, even if it isn't what I used to do. I used to play tennis 5 days a week, water ski, snow ski, walk, run, swim, aerobics, etc. Water exercises, needs to be 86 degrees or warmer. are really good for us to strengthen and keep mobile.
Are you with a physical therapist? I had two frozen shoulder and got both back thru a LOT of PT and massage therapy. Massage therapy really excelled my range of motion. I wasn't so fortunate when my hand froze up, Didn't get started soon enough, that's when I found out I had RSD. Got partial range of motion , but partially crippled. Sounds like you might need to see a specialist to help you. Isn't there meds to help build bone density and vitamins and certain foods. I work out with 1 lb. weights. not too long, but enough to keep strength. I'm sure others will have some ideas what they do. Don't give up!!!!
Do you have a good Dr. that you like? Take care of yourself, Loretta[/QUOTE]

Hi. I am so sorry to hear this news. I haven't spoken to you since the HBOT. I really don't have any answers for you. Just compassion. I really wish I did. I too, swim, lift light weights and my doctor told me "Just don't stop moving". Debbie, my bones hurt so bad, I have to lay in a soft bed with soft pillows all around. My hips are unbearable to lay on at night. I sleep alone, in the guest room because it has the softest mattress. I experience weakness in my limbs, but the degree varies from day to day. I too, was diagnosed with Fibro. Recent tests show arthritis in my spine where it mets the pelvic bone. Deb, this does suck! I think you know my regiment. Good diet, suppliments, grapeseed extract, anitoxidants, light weights, walking, yoga, prayer, meditation and HBOT. I still meet this challenge everyday. I really have to pace myself but also keep active. I understand your dispair. I wish there were more I could do or say. I really don't have any answers, just sending some love your way....Di

Hi Debbie,
Looks like I hit the button twice? smile Debbie I know despair and fear of losing our mobility is REAL.I was wondering if they have support group meetings near you. We have once a month meetings at a local hospital. It's actually at a neurological institute that is very well known nationally-Barrows Neurological Institute. The meetings are so upbuilding. We have had Drs. a really good one was a pharmacist who started a pain management group at the hospital where he worked. Time for questions and then social time afterward to visit in exchange information etc. I found out about it thru RSDS on web and then put in my zip code and they gave me name and phone number of the group leader. I think we have 3 in the Phoenix area and one in Tucson.

I went thru a long period of despair, really the grieving process, loss of life before RSD and life now. I had to pass dwelling on the life before and let go and look for things I can do and be grateful for. My Dr. is a psychiatrist, and neurologist and pharmacologist. so basically he is pain management and helped me emotionally work thru these losses. It is not easy or quick. I've found things that make me smile and laugh, old movies. my cat, reading, I've collected several albums and am going to organize pictures according to different trips. I did this for years , then fell back a few years ago. But I get such joy getting out albums and remembering various trips, friends, etc. Keeping in touch with friends and family , writing cards, phone e-mail are all good ways to reach out and how love.
I'm really excited about losing weight I gained on Neurotin and Lyrica. I'm close to 20 lbs now. so I have a ways to go, but I have not doubts I'll get there along with toning exercise. I was thin my whole life, had to be to keep up with my daughter, Had her when I was 31. We played tennis everyday, snow ski, water ski, horseback, swim, aerobics, boy we were active, hiking etc. I miss it sure, and have done a lot of crying, but I have clothes in the closet with the tags still on them! smile And not just a couple---
I hope you can find a support group or maybe start one. Please don't give up, I know it's hard. Right now I've got my first break out of lesions- so painful
I take vicodin also. Something that really calms me is Lorazepam 2 mg. 3xday. It's an anti-anxiety med and my Dr. and I both feel i get more benefit from that than just about anything. I went of two double dosed anti-depressants and went on lose dose of Cymbalta, which is also effective for fibromyalgia, advertised as the first drug approved for fibro. I can't believe how much better I feel on it instead of the other two drugs.
I had terrible electric jolts, jerks, spasms, etc night and day and was on neurotin 3200 mg. to make them stop. Then Lyrica was working for a lot of people so I wanted to try it- so went off the neurotin and was on 300 mg of Lyrica. My weight gain was very depressing, so Doc and I have been working together in going down till I'm on just 50 mg. and no jolts. So next call him and hopefully will go off.
I've had about 150 PT and 200 massage treatments and feel that is a huge reason for my mobility. I have full body, generalized 12 years now. The massage therapy is still wonderful to keep toned and moving. Don't give up. Please let me know if you find a group or even another person. Sometimes you can call a hospital's education program and ask if there is any support group for RSD or even chronic pain groups. That would be wonderful to get together with some others. Would you let me know? I'll see if I can find something out too. Take care, Loretta

Hi Loretta and Diana- Thanks for your responses- sorry to hear you are in so much pain Diana! Loretta you seem to have a good head for this now.
Actually I do co-run a support group here on Long Island. I can give others advice and the group does help me a lot. Its just with each level of increased pain I go thru I guess a morning period..Now I will probably have to take vicodin which makes me hung over which makes it hard for me to go to work. When I take vicodin or muscle relaxers I don't sleep well. Its like I cant get into a deep sleep and feel like sh** the next day. My biggest step recently was using a wheelchair at work. That was soo hard yet such a relief!! I don't feel like crying or screeming at work (although the arm pain/weakness has increased a lot!) I feel like this has just been a long nightmare and I will wake up and be normal again
Thanks again for your thoughts and ideas- Keep em coming:

Deb



ns- so painful
I take vicodin also. Something that really calms me is Lorazepam 2 mg. 3xday. It's an anti-anxiety med and my Dr. and I both feel i get more benefit from that than just about anything. I went of two double dosed anti-depressants and went on lose dose of Cymbalta, which is also effective for fibromyalgia, advertised as the first drug approved for fibro. I can't believe how much better I feel on it instead of the other two drugs.
I had terrible electric jolts, jerks, spasms, etc night and day and was on neurotin 3200 mg. to make them stop. Then Lyrica was working for a lot of people so I wanted to try it- so went off the neurotin and was on 300 mg of Lyrica. My weight gain was very depressing, so Doc and I have been working together in going down till I'm on just 50 mg. and no jolts. So next call him and hopefully will go off.
I've had about 150 PT and 200 massage treatments and feel that is a huge reason for my mobility. I have full body, generalized 12 years now. The massage therapy is still wonderful to keep toned and moving. Don't give up. Please let me know if you find a group or even another person. Sometimes you can call a hospital's education program and ask if there is any support group for RSD or even chronic pain groups. That would be wonderful to get together with some others. Would you let me know? I'll see if I can find something out too. Take care, Loretta[/QUOTE]