[bdarling]

I was diagnosed on Thursday with CRPS.
The doctor could tell instantly - my arm was a different color, hand swollen, don't have full range of motion in my thumb, palm sweating. I have been feeling those symptoms for months now (along with neck and shoulder pain)- the thumb is the most recent addition to these symptoms even though the hand swelling has been there. I noticed my arm would turn to ice in May of last year and that set me on the path to finding out what was wrong.

The thing is, I have problems with the entire right side of my body. I have had neck problems for years - MRI in November showed bulging discs, cervical stenosis, osteoarthritis.
I have pain in my right foot and calf. Posterior tibial tendinosis.
Pain in the right side of my back and butt.
Hand x-ray last Thursday was normal and ncv/emg in January showed mild carpal tunnel.

Lately all the pain has been mild except my neck/shoulder blade/arm/hand. That whole area is relentless. Somedays the pain is not as bad, but I never have a day that is good. I feel like two halves of the same person.
I still think it is mild compared to some of the stories I have been reading. I am feeling overwhelmed. This arm stuff that is making my hand swell was supposed to be carpal tunnel or ulner nerve damage or autoimmune...in my head anyways.

The doc said "this is not a good diagnosis" but it never showed up in my searches for "diseases that affect right side of body" so I left thinking it did not sound as bad as some of the other things I thought it could be. Then I started reading. Now I am scared.

I can still use my hand - some days work kills, but I can still do it. I started teaching myself to mouse with my left hand about a month ago because I could not use my right arm/shoulder and hand for that anymore.
In October of last year my shoulder froze and I could not move my hand across my body for 3 days. I am an artist by night and paralegal by day and I am not kidding when I say I am alone- single, no family in the area, and one friend.

Is this bound to get worse? Is there a chance it will stay on the right side only? Am I dreaming if I think maybe he was wrong and it is cervical stenosis or the carpal tunnel? I am terrified of neurontin. Tried cymbalta a few months back and I had to leave work to take naps. I can't take meds that affect my ability to work. Again, feeling overwhelmed and not sure what to do. They say treatment is important to go into remission, but does that mean i have to take neurontin asap? I am confused about early treatment. Thanks for listening...

[Jomar]

Some of what you mention, can overlap with thoracic outlet syndrome (TOS) for short.
We have a forum for it also , I suggest exploring there to see if the shoulder, neck & arm problems might come from that cause.
paralegal, computer & artist are arm/shoulder intensive factors.

TOS useful sticky thread- for crash course on it see post #1..and some therapy info included - http://neurotalk.psychcentral.com/thread84.html
here is one site that I always liked for basic starting TOS info, shows a few little tests you can try (not a 100% yes for tos but indicator that more testing is needed)
http://www.nismat.org/patients/injur...in-in-the-neck

I don't know if you have considered expert chiropractic care , maybe there are misalignments.
If the foundation is crooked , the building can fail..

The RSD/CRPS forum has sticky threads too about it.
Both conditions are possible too..

You & drs need to figure out for sure which you might have as treatments do vary..
Although both are a bit on the rare & unusual side for diagnosis.
Knowledgeable MDs, PTs, DCs etc are very important in these cases.

[Littlepaw]

Hello and welcome bdarling,

I am so sorry you have had to come join us whatever the cause for your pain. If your doctor is right and you do have CRPS hold on to hope. 80% of people improve over time according to a Cleveland Clinic CRPS bigwig.

I agree with Jo*mar about the overlap with TOS symptoms from what you are describing and treatments are quite different. And A good chiro can indeed be quite helpful. The other thing to consider is whether a nerve impingment is causing CRPS. If so it should be treated as that will improve your outcome. I too would be concerned like you are about cervical stenosis.

In addition to chiropractic you might consider seeing a Physical Medicine and Rehabilitation Doctor. They are often quite good at tracking down anatomical problems.

I am a big fan of second and even third opinions. Different specialties see the same problem through different lenses. If you feel you need a neurosurgical consult or other specialty to rule out any other causes then get one. All contributing factors should be ruled out before going with CRPS diagnoses. You need to feel comfortable and confident that nothing was missed. And the treatment for CRPS - movement, exercise, PT may aggravate a TOS or stenosis situation if that is part of the problem.

I encourage you to ignore the doomsday info on the internet about CRPS. What you see written out there and on here is often about the worst cases. CRPS is a spectrum and there are many treatments that will make life more comfortable. Neurontin will dampen angry nerve signals and nortriptyline in low doses down regulates pain signaling. There is benefit in staying comfortable.

You may want to watch Dr. Pradeep Chopra's "CRPS Diagnosis and Management" video which is on YouTube. It is chock full of tips on treatment and comes from a well respected compassionate specialist. Sorry, I can't link right now...

Please come let us know how you're doing and be kind to yourself. It is very scary in the beginning but it does get easier and keeping your stress down is good all around. We are here for sharing and support.

[PurpleFoot721]

Hello and welcome to NeuroTalk

I can't say for sure if you do or do not have CRPS, TOS, CTS... What I can say, Jo*Mar did give some good information and you may want to check out some of those links and suggestions. A good chiropractor can often do a lot of good whether CRPS or another disorder that can be aggravated by complications in the spine. A lot of CRPS patients are often misdiagnosed at first. It can often take years to get a proper diagnosis. I have never been on Cymbalta, but Neurontin did not make me sleepy. That does not mean that it will not be the same for you, since I have read some of the other members here did get a little sleepy. If you do not feel comfortable with the treatment, bring it up with your doctor. There are other options out there. I will say this though, the more aggressive you are early on in your treatment, the more likely the chance of remission.

Whatever the results, and whatever you decide to do, we are here to support you along the way. We are here to share our experiences and answer any questions you may have.

[PurpleFoot721]

Link to the Chopra video that Littlepaw mentioned.
https://www.youtube.com/watch?v=s3LK...ndex=4&list=WL
I would recommend it as well.

[mommystime2]

I can honestly say I get you. I was diagnosed with crps in both arms originally, now it states crps upper right limb, but I've had back n neck problems for years not kidding 14 yrs and almost 4 months, but my legs both have problems with both feet swelling and painful and burn and yes I do believe crps has spread to include lower limbs but Drs disagree and have diagnosed with stiff person syndrome. It's seeming to be a game of sorts. Physical therapy and adjustments helped dramatically. Also seeing a great neurologist I would suggest.

[Imahotep]

No, it's not bound to get worse. You must find the things that help and identify the things that make it worse and try to eliminate them. You'll almost certainly need pain meds and other meds to target specific symptoms. Most people with RSD will eventually have an effect on how they think which frequently manifests as depression. There are meds for this as well if and when it occurs. You'll probably get little relief from pain meds but some of us get some relief from one or another. Eat well, sleep well, and get as much exercise as you can tolerate but try to never over do it. Avoid caffeine, try grape seed extract and ginko biloba. Listen to the docs and therapists but never take their word as gospel because each of us reacts differently to stimuli, medications, and exercise.

It's very important to keep fighting even if we can't beat it. The disease may change your life but there is still life after RSD. Try not to let go of things unless there's no choice.

Best wishes and good luck.