RSD spreading??

ddswaffer · 07-19-2013, 11:20 PM

Reading your message and I know the "freaking out". RSD sucks and the diagnosis is devastating. I have RSD too. My husband researched and I went to Calmar in RI. It's amazing! I wish it were accessible all over the country so people didn't have to suffer and go through ridiculous treatments.
*edit*
-Dana

Quote:

Originally Posted by cozyc

I had shoulder surgery back in november which caused me to now have RSD. It seemed to have spread into my other shoulder, neck area, as my non injured shoulder now imitates my injured one-which I know I haven't injured it. My neck and shoulder area just feel so heavy and a lot of times I feel like my bones are being smashed along with the random aching and electricital shocks-all are less often because of the neurotin but still extremely painful.

Over the last couple of weeks I have had random pains in my feet that I have been trying to ignore. Now they have gotten more often, always when the evening comes and throughout the night. When I wake in the morning I have to walk around for a while and then the pain dissipates and has been disappearing until the evening comes again. The pain makes it very hard to walk. Sometimes it mimicks the smashing sensation when I'm trying to fall asleep and it just plain hurts to walk.

It has progressed the last couple days to be consistent every night instead of random nights of discomfort. My injury is a workers comp case and because of that I am sitting here waiting for over two months now to try and see a specialist to finally try ketamine infusions which now may be my only hope.

Do the symptoms I'm describing sound like it is spreading and if so is there anything anyone can recommend to stop it?? I have been trying to keep up on the treadmill workout starting the last two months to keep myself healthy and somewhat active without causing issues with my upper body but now I am concerned it may be in my feet and then should I not workout anymore? I wish someone could say no don't do it it will make it spread or yes do it it will stop it from spreading, etc.

I'm just really freaking out

AZ-Di · 07-20-2013, 01:25 AM

Man, do I ever understand those feelings. I think I feel spreading at times myself although it is not as detectable as yours. That's just one of the things with this disease that sucks, it's different with everyone. There just needs to be so much more research into this.
From my experience, slow, steady, gentle movement does help and keeping "good" body parts moving does help for me as long as it is not painful or traumatic. But, that may not be the case for you.
It's hard to find a pattern with RSD/DRPS with me anyway. The only consistency so far seems to be with the nerve blocks and meds. I just can't take as high of a dosage of meds. as my Dr. would like.
I did try the spinal cord stimulator and was happy with the pain relief and subsequent push in range of motion afforded by that in physical therapy, but I did not like the trade off of loss of range of motion and pain in back and neck.

SloRian · 07-26-2013, 02:40 PM

Hi cozyc,

Like ddswaffer, my daughter tried Calmare (but in NJ), and thank God it put her into remission. It lasted 3 months then we needed 4 booster treatments and she's back in remission.

I'm so sorry you have to battle this monster

It's horrible! I love your warning lights idea! It's really hard for other people to realize how painful it is, let alone try to figure out is it a horrible pain day or merely an awful pain day ... a little set of colored lights on the forehead would be handy! (it helps to keep a sense of humor)

Anyway, several of us have had good luck with Calmare, and it doesn't work as well if you've had ketamine, so if you want to consider it, you'd probably want to do it before doing ketamine. Best wishes and prayers for finding the right combination of treatments for you!

anonymous730 · 07-21-2013, 03:45 AM

Thank you for the replies

even though I don't write too often to a lot of the other threads I see on here because its hard for me to write I general, I do read a lot of them and reading them have helped me so much to not feel alone which means so much.

Just wondering, the horrible bone crushing type episodes some of us have-does anyone know if this pain is due to osteoporosis secondary to the crps? Or just a type of pain that feels like deep bone smashing pain but it's really not. I just had a really intense episode in my forearm that last over a minute-instead of a vague pain on and off throughout a period of time. All my pain varies so much throughout the day, minute, etc. A lot of my electrical episodes now only last about 20 seconds at most. Before I was on the neurotin I would have the bone crushing type episodes continuously along with the constant aching-so much I wanted to rip my arm off and just cried. Now that I am on the neurotin with no breaks it has definitely lessened that pain as well as my hypersensitivity and burning. The bone pain and aching is the same stuff I now feel in the feet come the evening which scares me

I have found something that may help-I think every two days I need to just give in and stay in bed all day and "recharge", especially since I'm still pushing myself more than should/figured out. The night of the day I recharged was the first night in two weeks that my feet didn't hurt

finally-I did something right!

now, to find a way to make my arms and shoulders and feet not hurt at all...hmmm

07-21-2013, 07:30 AM

It is known that RSD can cause osteoporosis along with muscle waistage. So far haven't got osteo although my lower arm is now 1 & 1/2 inches narrower than is used to be and the bicep 2ins narrower

fbodgrl · 07-21-2013, 07:54 AM

I'm no help really, but understand your feelings. I have so many random aches and pains and usually I have no idea why it is happening!

I think mine is spreading to my foot, leg (up to my knee) Right now it is in my left hand and arm. My doctor seems to be discounting the pain and still thinks it is just tarsal tunnel.

AZ-Di · 07-21-2013, 12:40 PM

Quote:

Originally Posted by fbodgrl

I'm no help really, but understand your feelings. I have so many random aches and pains and usually I have no idea why it is happening!

I think mine is spreading to my foot, leg (up to my knee) Right now it is in my left hand and arm. My doctor seems to be discounting the pain and still thinks it is just tarsal tunnel.

Just my opinion, and easier said than done - but, I really think you should find another dr. or get a referral or something. It will be very important to your future care to get a correct diagnosis. This is especially true if the SRPS affects your work. You may need consistent records for FMLA and sick time etc.

fbodgrl · 07-21-2013, 05:14 PM

Quote:

Originally Posted by AZ-Di

Just my opinion, and easier said than done - but, I really think you should find another dr. or get a referral or something. It will be very important to your future care to get a correct diagnosis. This is especially true if the SRPS affects your work. You may need consistent records for FMLA and sick time etc.

The RSD has already been diagnosed in my arm and hand. I am not working and haven't for nearly 2 years. I am on long term disability insurance and working on getting my SSDI.

I also have RA, chronic migraine, IBS and secondary Fibrmyalgia. I see a Rheumatologist, a Pain management, Neurologist and my regular doctor.

cartee4613 · 07-26-2013, 11:56 PM

I have RSD in my right leg with it spreading to my left leg. I was told by my physical therapist who I have been going to for 7 years as well as my pain management doctor whom specializes in RSD that exercise is extremely beneficial to a patient suffering from RSD.

Its why they almost always prescribe physical therapy. He explained to me that because of RSD being a disease that so often takes over the body and its degenerative effects on muscles and such that it is crucial to continuously use them to fight it off. He did say to always keep to what your body can handle and he highly highly encouraged me to check with a physical therapist to be sure I was doing appropriate exercise without causing damage.

Obviously contact sports aren't beneficial to my condition but routine exercise that my body can tolerate such as treadmill, weighted leg lifts, the shuttle and so on are really good things to keep up on. I for sure would talk to my doctor and even ask to be sent to physical therapy to see what they suggest. Good luck and God bless.

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