Help with Chronic Pain Syndrome
 

First, I must ask the relationship between RSD/CRPS and CPS. I have read that these are definitly two different things, but when I search for CPS I keep getting RSD results. I'm having a really hard time finding a forum or some relatable stories about CPS. My best guess is that if you have RSD you pretty much have CPS, but not the other way around.

I've visited the PN and MS forums. Now that I know I DON"T have MS :D I just have to focus on the pain. Unfortunately the symptoms are very close to MS. And I do have PN, just not "true" neuropathy (is what I"ve been told), even though he said if I did a biopsy it would show a little small fiber neuropathy.

It seems to me you are all in as much pain as I am, and probably get treated the same.

I was injured Nov 2011 by a chemical burn, neuropathy started by July 2012 and it's been downhill from there. I hurt all over, fatigue, brain fog, neuropathy feeling, a tremor in my right hand and more. I'm currently taking Oxcarbazepine (an anticonvulsant) instead of Gabapentin because that made me too stupid. The Oxcarb is working well. I forgot to take two in a row and man I felt it!! Taking Levothyroxine because my thyroid messed up after the trauma of surgery, taking both Wellbutrin and Zoloft, have taken B12, D, Magnesium, MMJ. No optiates because after my burn I got addicted to Percocet in a very short time with half what the doc said I should take. It was horrible!

I've seen the pain doc. She won't give me any opiates for breakthrough pain because I smoke MMJ. Tramadol doesn't work, it made me super sick when I tried it once. I'm very sensitive to many drugs. I was hoping for some non-opiate breakthrough pill but no luck. The pot works, but I work full time so I can only use it in the evenings. She suggested a neurostimulator. I got capcasian cream for my PN, which kind of works.

So... Saw the doc at UCSF this week. He dxed me with Chronic Pain Syndrome. Great, my brain is screwing up my body. He said one of the best things for me is exercise. But my feet and body hurt constantly, so it's a fight, I realize it's a viscous circle. My DD gets me out biking sometimes, but I really need a pool! I asked him about supplements and he suggested a multi-vitamin. :confused: I think specific supplements might do better?? Anybody find anything natural that helps with the pain?

Fatigue is really getting to me. Yesterday I had a migraine, came home from work, went to bed and slept all night until my alarm went off at 6am. It takes me three times as long as it should to do anything at all. Is there anything I can do for fatigue? I've read that the MS'ers are actually getting prescrips for things like Ritalin. :(

My guess is that the best thing for me is to not work, take the time to both rest and exercise, keep my stress down. I'm getting a settlement in a couple months so my goal is to take time off work, like a couple years. My PCP was ready to take me off work when I went in last. I just want to wait (and suffer) until my settlement is done so I can set my goals. Has taking time off work worked for anybody? At least to get the pain to a manageable level?

I want to join the gym for swimming, but it's $110 a month! I'm going to ask my doc for a prescrip and see if my insurance will cover it. I doubt it, but I guess it's worth trying.

Anything I should know, tips, etc, please let me know.

Hi Chaos,

As I understand it, Chronic Pain is defined as pain that persists for more than 3-6 months. Chronic Pain Syndrome (CPS) is a psychosocial disorder that occurs in some patients with (noncancer) Chronic Pain in which symptoms of the pain consume the attention of the patients and becomes incapacitating.

The reason you keep getting RSD results may be that RSD is a term formerly used for CRPS (and is now considered only one type of CRPS). Chronic Regional Pain Syndrome (CRPS) is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin, and is one form of CPS.

[N.B. CRPS folks—have I got that right?] Yes, it's confusing. :Hum:

I do not have CRPS. I am a chronic pain patient, however with much effort, I try hard not to allow my pain to consume my life, so I may not have CPS. Diagnoses are sometimes educated guesses/opinions. Whether or not you truly have CPS may be a judgment call/opinion of your doctor—another doctor may or may not concur.

You might try searching the archives for threads/posts about CPS—perhaps in the Chronic Pain forum.

I've had some success with adrenal hormone replacement therapy for intractable pain, as written about by Dr. Forest Tennant in The Intractable Pain Patient's Handbook for Survival and other articles by him.

Hope this may help,

Doc

Hello Chaos,

You are on the right track - YES, people with RSD have chronic pain associated with the RSD. But, just because someone has Chronic Pain Syndrome does NOT mean they have RSD/CRPS. One can be diagnosed with Chronic Pain if neck pain is ongoing or lasts longer than 3-6 months or any other type of injury/illness that causes ongoing pain. However there is usually an inciting event (injury) or disease process (ie., arthritis, cancer, infection) that precludes the onset of CPS.

The difference between CPS and CRPS type 1 & 2 formerly known as RSD (CRPS I) and Causalgia (CRPS II) are the symptoms, pain pattern and progression/spread of the disease.

Since with all of the above we deal with intense chronic pain then yes, part of the treatment is focused on how to live and cope with a chronic pain condition.

It may be helpful to others on this board to offer more information on what underlying condition or injury eventually lead to the CPS diagnosis. If in reading through these boards you find many similarities in symptoms maybe check with your doctors to see that CRPS 1 or 2 has been ruled out as a possible diagnosis. It isn't uncommon to be missed diagnosed.

Regarding vitamins: A multivitamin would be a great start. You can also increase daily vitamin C to 1000 mg per day. Taking an extra B supplement (including B6 & B12) will increase your energy and help aid the body in cellular healing. Magnesium, Potassium and Vitamin D3 are also great supplements to add or to be sure is in the multivitamin you may take. Ginger is excellent for anti-inflammatory and digestive purposes eaten raw or purchased for tea.

As far as exercise goes- it does help with pain and overall mood but, as you said this can be challenging when fighting pain or fatigue. Even if you can only walk use a stationary bike etc., for even just 10 min a few times a day that would be much better than doing nothing. I know it seems like it wouldn't help but, honestly it does. At least for me there isn't anything I can do without pain.. so I gauge my limitations more by how long it takes for pain to start to decrease after I stop whatever form of therapy I am doing. I know that I am okay and not pushing myself to hard if the pain starts to decrease within a few hours after I stop. I also brake up my daily therapy sessions into 3-4 blocks throughout the day rather than 1 long session. I follow each session with a short soak in epsom salt or some other form of pleasure and relaxation. Whatever you do for therapy exercise please don't set yourself up for failure by thinking you have to do it for any amount of time to receive the benefits it will provide. Start off slowly and increase by a minute or more every 2-3 days. Also, I would be reluctant myself to spend $$ on a gym until I was consistent in a home routine.. otherwise if you aren't able to use it for whatever reason you will then feel worse because of the $ already spent on it. Once you have established a routine for a month or more then consider this membership as a reward/upgrade to your established routine. Just my 2 cents on that :)

Anyways I do hope you find the support you are looking for!
Tessa