[lindkaye]

Thought I would ask if anyone suffering from RSD has come down with aching and stiffness in their other areas not affected? I feel like I'm loosing my mind with this disease! I have RSD in my knee, but the last month or so my feet and lower back hurt so bad in the mornings, I can hardly get out of bed and start walking. It gets a llittle better during the day, but seems to get worse again at evening. Now my fingers and hands are aching also, very stiff and sometimes a little swollen. What I don't understand is that I'm on such strong pain meds already for my knee (methadone and oxycodone), shouldn't this take care of it? I have put a call into my pain med doc, but still waiting after 1-1/2 weeks to see if they can get me in sooner than the original October they suggested! Guess I just need to hear from someone if they have experienced this from RSD or could it be something else? Thanks for listening.

[dreambeliever128]

Welcome to the group.

When I first started with RSD in my right arm and hand, I dealt with stiffness in my hands and fingers. I would wake up of the Morning and my fingers would be curled up, swollen, and very sore. I was on Methadone for pain for years but it didn't help with those things. I have had RSD since around 98. Physical Therapy helped with all of that. My PT'er's stretched my arms and fingers and massaged my upper chest area and finally got a lot of it calmed down. I also had Triggerpoint injections to help calm things down. My Dr. used Lidocaine injections. It took a long time but it helped, I also had blocks. I also think the pain makes us tense up so bad that we tend to curl up and stay that way until we can get some of it calmed down.

What I have learned from myself and talking to RSD patients is that it takes time and different things to calm down some of the symptoms. Right now I am dealing with hip pain. I got a shot in my hip last night in hopes to get that calmed down. I also got one in my chest area to help with my TOS. I am starting arobics Monday in hopes to help with the winter pain.

At this point, I am on no pain meds and it's took 10 years to get me to that point. I am not painfree but a lot more comfortable then I was.

I agree you should talk to your Dr. about it and see if he can't put you on muscle relaxers to try and help. I don't know if you are on depression meds but depression comes with RSD most often as not.

Hope you feel better soon.

Ada

[dealingwithtos]

Hi.

First, NO! you're not losing your mind.

I have TOS - which resulted in rib resection surgery - which resulted in RSD - which resulted in fibromyalgia also.

I often feel that way in the am. It takes a little while to loosen things up and then by the end of the day, I'm in horrible pain - everywhere. But, it's different pain than the RSD pain. It's heaviness, very stiff, joints hurt when you use them or put weight on them. It obviously depends on the day too. For me, I feel it when there's a storm coming in and in the winter time.

What you mentioned to me sounds like fibro symptoms. You would want to see a rheumatologist if you find that when you research your symptoms that that also sounds like you. Check out a fibromyalgia website.

Good luck.

[loretta]

Originally Posted by dealingwithtos

Hi.

First, NO! you're not losing your mind.

I have TOS - which resulted in rib resection surgery - which resulted in RSD - which resulted in fibromyalgia also.

I often feel that way in the am. It takes a little while to loosen things up and then by the end of the day, I'm in horrible pain - everywhere. But, it's different pain than the RSD pain. It's heaviness, very stiff, joints hurt when you use them or put weight on them. It obviously depends on the day too. For me, I feel it when there's a storm coming in and in the winter time.

What you mentioned to me sounds like fibro symptoms. You would want to see a rheumatologist if you find that when you research your symptoms that that also sounds like you. Check out a fibromyalgia website.

Good luck.

Hi and Welcome Lindkaye,

Could it be your RSD is spreading? It seems to me that your symptons
idicate that is a possibility.My RSD started 12 years ago following surgery.
Eventually, it mirrored then moved from top half to both feet and legs. It's also in my back now, full body or generalized they call it. There are so many on this forum that have both RSD and fibromyalgia. Tos is also diagnosed by some, but I'm not familiar with that. Besides the anti-depressants, pain meds,
Lyrica or Neurotin- anti-seizure that also helps with pain. Besides all those,
Anti-anxiety meds helps me, because like others said, if you can keep calm,
it inturn, reduces the aches and pains. It seems most of us on here are at our worst in the AM , then as the day progresses so does the pain. How long have you had RSD? Another member, Coffeebean also posted the anti-anxiety helped her a lot too. It is a bad one to have. Distraction methods, like music, scented candles, epsom salt baths, or lavender oil bath, funny movied, a good book, travel chanel shows, visiting a understanding friend on the phone, writing cards to family and friends. meditating is a wonderful help, especially on things we are grateful for, good memories growing up or raising our children, looking at photo albums, prayer, swimming is really kept me for It curls about 4'clock and is locked in. stretching is another things I try to do dailey. This RSD can really cripple you, put you in wheelchair, but I'm determined to not let happen if possible. I'm so sorry you have this, I hope you have a good Dr. that areally understands it, it can go internally affect
critical organs and play havoc on your blood pressure, because it involves the autonomic nervous system. How did you hurt your knee? I'm really sorry you have this, I went years without the proper diagnosis. Now have a great Dr.
Sincerely, Loretta Jewell

[Annie Poo]

I occasionally feel achy like I have the flu but without a fever. It was more common when I first went on gabapentin, and is not as common now. It feels like all-over body aches.

[Imahotep]

Sometimes on a short walk to my car I limp on one leg and then the other. It just goes all over. Sometimes, especially in the morning, I feel great but it comes and goes.

For me this has been mostly about finding the triggers. There are lots of them.

[lindkaye]

Thanks everyone for your ideas. I'm not sure what is going on .... just know I have never felt like this ever before! I had my total knee replacement in Dec 07 and was diagnosed with RSD in early March 08 after I made no progress with my knee. The aching in my feet,hands and lower back has come on just the last 1-2 months. Its a different feeling than the RSD in my knee - which burns and has stabbing pains, skin is sore to touch like a sunburn. My hands and feet feel like I cant bend them, and ache severely, almost like when you have a severe flu. I like my pain doc - but he is really hard to get into to see. Took them 1-1/2 weeks just to call me back - and is a 3 month wait to see him = even if you are an established patient! I am trying to get in to see another pain med doc to get another opinion and discuss these new problems. I don't feel like I should have to wait months to discuss new symptoms with my dr. I understand they are busy, but should have time for existing patients. I am having a really hard time accepting the RSD and getting more depressed each day - which I believe anyone would having this. I haven't tried any antidepressents yet, I feel "fuzzy" enough with the pain meds and worry how the antidepressents would make me feel. I get mainly upset thinking of how this is effecting my family and also financially as I am applying for SS disability. Sorry to ramble on - thanks again for everyones comments, its nice to have someone understand what I'm going thru and give me ideas

[loretta]

Originally Posted by lindkaye

Thanks everyone for your ideas. I'm not sure what is going on .... just know I have never felt like this ever before! I had my total knee replacement in Dec 07 and was diagnosed with RSD in early March 08 after I made no progress with my knee. The aching in my feet,hands and lower back has come on just the last 1-2 months. Its a different feeling than the RSD in my knee - which burns and has stabbing pains, skin is sore to touch like a sunburn. My hands and feet feel like I cant bend them, and ache severely, almost like when you have a severe flu. I like my pain doc - but he is really hard to get into to see. Took them 1-1/2 weeks just to call me back - and is a 3 month wait to see him = even if you are an established patient! I am trying to get in to see another pain med doc to get another opinion and discuss these new problems. I don't feel like I should have to wait months to discuss new symptoms with my dr. I understand they are busy, but should have time for existing patients. I am having a really hard time accepting the RSD and getting more depressed each day - which I believe anyone would having this. I haven't tried any antidepressents yet, I feel "fuzzy" enough with the pain meds and worry how the antidepressents would make me feel. I get mainly upset thinking of how this is effecting my family and also financially as I am applying for SS disability. Sorry to ramble on - thanks again for everyones comments, its nice to have someone understand what I'm going thru and give me ideas

Hi Lindkaye, I'm sorry you going thru this nightmare. Dealing with pain 24/7 is so difficult. Talking here really helps to understand what is happening to us. Of course, everyone is different is some ways and certainly meds work differently for different people. But I know what you mean about depression, depression really is a central part of RSD. It's because RSD affects the Limbic part of your brain that controls emotions, and judgment. What's why the depression, not to mention the huge changes in our lives, like loss. It's like the grieving process because there is so much loss. What we used to do, we can't now.Our family still loves us, but it's difficult for them to understand the changes we go thru. Most of us have a difficult time with social settings and shy away because of our limited energy level and being in pain doesn't lend itself to wanting to be around people. I'm on two different anti-depressants, both double dosed. Most of us take them not just to help with the depression, but the components of the drug help with nerve pain. After seeing many Drs. and getting correct diagnosis, I've ending up with a wonderful phychiatrist, that also is a neurologist and a degree in pharmacology. I've seen him for four years once a month, and now I see him everyother month. The Dr. that correctly diagnosed me was a hand orthopedic surgeon. It took him 30 seconds and confirmed at the hospital in the neuclear med. dept. Even though my surgery was breast surgery, the next day my entire arm swelled and the shoulder started too get stiff and froze up so bad, had maybe 100 physical therapy session to get range of motion back to almost normal. Then moved to the other shoulder and more therapy. Then some time passed and I felt a pull in my left hand while water skiing. It froze up like a board, and back to therapy. I think I mentioned to you before, it is only partially useful. It's so important to try and keep moving, even sqeezing a soft rubber ball. or swimming and sqeezing your toes so they won't curl up, then walking is a problem. It sounds like you need a orthopedic Dr. and/or neurologist is see what is going on. So many of us have fibromyalgia too. It does feel like the flu and muscle aching. I also have the burning, the stabbing and electric shocks, muscle spasms, stopped when I was on neurotin. 3200 mg dailey. I've switched to Lyrica, I feel it works better on the nerve pain. Others feel differently. I know one thing, Both drugs cause weight gain. I hate that and am working so hard to get it off. One things that helps with the sadness, grief, loss, is journaling. Get a tabled and write in it about your true feelings and sadness, let your feelings out. I went thru two years of therapy when my parents died and writing really helped me, of course prayer. I hope your application for SSI goes well. I talked to my Dr last week about SSI and he said he would back me. So I'm going to apply too. I can no longer work. I'm going to use an attorney. My daughter is a court reporter and is going to give me the name of a good one, specializing in SSI. I hope you get in to see your Dr. soon. Loretta

[tjbird]

Lindkaye,
I have been telling my pain doc for months my pain in other places is getting worse. I tore my knee up when I broke my leg in three places (during the rcovery of the broken leg I had bone infection) my orthopedic said she could not replace the knee as I tore my ACL and my miniscus is shredded. I need some exercise but the Osteoarthritis is getting worse in my knee. She warned me that I was going to be in terrible pain and she sent me to the pain center for a pain pump. They found the RSD so they have been focusing on the RSD all the while my knee is screaming! Now I have so much going on that the plan of having the stimulater for the RSD is accomplised but now I have so much pain all over that they have to re-evaluate. So hang in and keep expressing your pain issues and I will be hopeful for you to find some answers. It does seem like there is no end so I have to take it day by day and keep talking to others who have this monster.
Wish you a little bit of pain relief.
tjbird

[janesvett]

Originally Posted by lindkaye

Thought I would ask if anyone suffering from RSD has come down with aching and stiffness in their other areas not affected? I feel like I'm loosing my mind with this disease! I have RSD in my knee, but the last month or so my feet and lower back hurt so bad in the mornings, I can hardly get out of bed and start walking. It gets a llittle better during the day, but seems to get worse again at evening. Now my fingers and hands are aching also, very stiff and sometimes a little swollen. What I don't understand is that I'm on such strong pain meds already for my knee (methadone and oxycodone), shouldn't this take care of it? I have put a call into my pain med doc, but still waiting after 1-1/2 weeks to see if they can get me in sooner than the original October they suggested! Guess I just need to hear from someone if they have experienced this from RSD or could it be something else? Thanks for listening.

hi...i have rsd from a spinal cord injury in my neck...the ache in my body, so bad i told my doc i looked like an arthritic old woman, and the dry, bleeding condition of my right hand, was what tipped him off that i had rsd in the first place. it definitely is part of the disease, it is how i was initially diagnosed. i had no idea, but when my doc asked how i was feeling, i figured why not and i told him that i could hardly walk when i got up in the morning...especially since it was new for me. he just nodded his head, and said it was rsd and recommended a stellate block. hang in there...i am on dilaudid, and methadone, lyrica and cymbata and still feel like i am an old lady. it hurts so bad, and now i am swelling up like a balloon, my feet and legs, and my hand turned different colors (purple, blue, red) and went hot or cold, never the same as the left. rsd is a blast!! yeah right...