Body Aches anyone?
 

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 Lindkaye.
 

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

Fibromyalgia?
 

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.

Body Aches
 

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

feeling "flu-ish"
 

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.

thanks for the responses
 

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

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.

Hi Lindkaye
 

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

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...

Hi Janesvett, I'm so sorry, I know it's hard. Did the blocks help? They are supposed to within the first year. I was diagnosed so many years later. I also take Lyrica, it works well for me, before Lyrica about a year ago I took
3200 mg a day.Lyrica works better on the pain both make you gain wait, and I'm not just talking about 5 lbs. I was suze 5 since high school-30 years, now a few sizes higher. I;m really really tring this is funny-- I still have rows and rows of clothers in my closet with the plastic bags on them and also the price tags:) Swimming and full body massage reallly help,stretching exercises. We live in AZ it's still 105 So manybe another moth I can get on a walking routine.I I will you it really helps to keep moving, when it cools down a little I'm going to start up walking again, just a little at a time. Keep trying ladies, and don't give up Take Care LORETTA:)

body aches anyone?
 

well, yeah, body aches....mornings are ususally bad, and I think I agree with the person who said that part of it can be that we get so tightened up trying to protect from the pain and tighten against the pain that we end up all stiff. I know I kind of do, and that when I work on relaxing (breathing helps, too) and moving, and getting things in motion (massage also helps but oh boy that hurts so I kinda' look at it like bitter medicine...something you sometimes gotta take but sure as heck ain't happy about...), then it helps. Usually mid morning is my best time of day, then the pain starts to get worse again toward the evening, awfulest in the early night, and actualy a little very late at night (read: early morning) which is when I finally manage to get some sleep.
I don't know if the body pains are part of RSD (it does't really come with too much hypersensitivity to touch or some such, but aches and flu-like, and pains and stiffness and stuff), but they sure seem to be connected in some way. Maybe also becasue of how the nerve endings become sensitized to the pain and all that.
Hope you find something that helps, Annie

Hey there !
I know exactly how you feel. I have allot of aches and pains that are not in the area of my RSD. I wonder sometimes if it is all related... One thing I can tell you is that my husband is also on Methadone and Oxy for his back injury pain and one thing methadone and other pain meds are notorious for doing is causing swelling of the extremeties hand,feet etC. Notice if you have pitting edema in your legs (sit down and push your finger into your lower leg near your ankle hold it for 5 sec and let go if your imprint sticks you have edema. Methadone can cause this type of swelling which can make you ache and feel the way you do. Ask your Doctor about this and if you have edema I would let your doc know right aay as it could be something he wants to address asap. I hope this helps my friend....

Sincerely,
Kimberly

I have the aches too. I think some may be cause I am so cautious of my body though most of my issue is in my inner ankle/foot/calf but also at one time had a back issue and still flares. Anyhow I think that I protect my leg so much that I tend to not have range of motion with other parts either which cause stiffness. I also feel when one body part even hurts so bad it can make you ache all over. I have heard non chronic pain people comment on that even. A couple docs suggested epsom salt baths which I hate but some find it helpful

Rsd / crps
 

I'm an occupational therapist who has been involved with the care and mangement of RSD. I would advises you to go to a neurologist that knows and treat RSD. You might benefit from other form of care rather than just taking medications which are not addressing all the issues common to RSD. Have you ever had a blocK? RSD symptoms tend to travel to other body parts, you are not experiencing something that is uncommon to RSD, but you need to take charge and research other possibilities as well as the right care provider. I can send you some information just let me know. My brother was electrocuted 1992 and developed RSD and he is doing better. If I can be of any help, I'm here
regards, and I hope you find the right path.
R.Rivera

update
 

Since I posted - I have been able to get into the pain management doc. Thanks to everyone for their posts - it made me feel like Im not alone with all these aches & pains. I came down with RSD in my knee after my total knee replacement after Christmas last year. I have had 6 lumbar blocks which helped about 6-8 hours after each one - enough time to have a pt appt and get the leg moving a little. But I have had to stop these for awhile due to finances since I can't work or drive. Ive also had to limit the outside Pt appts as well - but doing them at home on my own still. Anyway - I was able to get into the doc. He has now put me on Lyrica and Cymbalta besides the Methadone and Oxycodone. The pain management doc thought maybe it was inflamation resulting indirectly from the RSD. I still have the severe stiffness and really bad "toothache" pain (as I call it) in my hands and feet every am and evening. Now with the fall/winter rain season here - I know it doesn't help my aching also. I have now also seen my original ortho doc - who is now talking about wanting to go back in and open my knee up to get the scar tissue out and maybe help the mobility of my knee. He stated he would do this with consulting my pain management doc - to make sure they would have the pain of the RSD under control during this. But I am not sure at this point - I don't want to have more pain - I want my leg to move - but cannot stand more pain at this point. So life goes on. I really appreciate everyone for their responses on this board - it makes me feel like I'm not going insane with this - it is terribly real and something i have to come to accept (for now anyway). Thanks - and take care everyone!

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

Hello,
I used to be on methadone and even though I was on a fluid pill I would get times of severe swelling. I started falling asleep while I was doing things like walking. So I had them take me off of it and they put me on morphine, and I lost 10lbs of fluid right away however I think it was better with the pain that I have all over unless I have just been getting worse really fast, I don't miss the edema but I miss having pain relief.
tjbird

I do get very stiff and have a deep ache in the area and near by. I find this true if I am in a position too long. So I try to get up if sitting too long and same with laying. It is hard sometimes to get moving when the pain is so high but for me it is a must. I am not saying this for you but my experience. I wonder if you should look into a different form of treatment other then meds? Have you been tested for other conditions? I also have PN but through the process was tested for fibromyalgia,auto immune etc. Hang in there