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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Looking For Some Advice - Chronic Pain

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Old 10-03-2019, 07:37 PM   #1
Jack21
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Join Date: Oct 2019
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Default Looking For Some Advice - Chronic Pain

Hi, I'm new here, but I decided to post to ask for advice. I really am at my wit's end.

I was diagnosed with RSD/ CRPS more than twenty years ago.The condition went un-diagnosed / misdiagnosed for almost three years before they figured it out. By the time treatment was started, I was essentially an invalid.

Since then, they've tried all sorts of treatments. Neurontin, mexiletine, amitriptyline, Lyrica, NSAIDS, Naproxen, Toxin injections, Lidocaine patches, compound topical creams,steroids, and more.

I've done biofeedback, meditation, very light supervised stretching and yoga, vegetarian and vegan diets, keto, 14 hour fasting, IR sauna, hydrotherapy, craniosacral massage, chiropractic multiple times, even prayer circles and visits to two faith healers (yes, even that),Curcumin, Ginger, other herbal medications...

Nothing has helped a great deal. Some things have helped a little, but nothing helps much. A number of these treatments have made things worse. All this time I have maintained a light exercise program that was suggested by the doctors, and I've followed it carefully to prevent from putting on massive weight gains or losing the strength I have left. But literally any exertion seems to up my pain levels now, and I don't have good enough pain meds to cope any longer.

Originally, I was put on morphine without any issues and no drug testing. Along the way I was prescribed Percocet, Tylenol 3, and a couple others that did not do much for the pain. Then, with no warning, the doctor at the time moved me to Fentanyl patches and Hydrocodone, again, no drug testing. Then, with no warning, I was moved to Nucynta and Lyrica, now they wanted drug testing, most of which, I had to pay for as my insurance company at the time deemed it "not medically necessary"...

Then a year ago, abruptly and after all perfectly clean drug tests, I was moved to Tramadol without any input in the matter...

Tramadol is maybe 35-40% as effective for me as morphine was. Fentanyl was probably a little better than Nucynta, maybe about 90% of what morphine did, but either way I was able to maintain some sort of life.

I've complained to my doctor in the past that I can barely function on this level of pain relief. I do not have have breakthrough pain, I am always in pain. I can barely walk enough to make it to an electric cart at the grocery store, and if there is no handicapped space open within ten minutes or so, I've had to just forget about getting groceries and drive home without for the first time ever. I get very stiff after being in the car long.

Needless to say, I have NO social life. I have no more friends, I don't even go to church. I only leave the house when I absolutely need something, because I don't know if can deal with the pain long enough to get back home

I've explained all this, carefully to the doctor. The doctor has refused to move me to a more effective pain med than Tramadol. He just cites the government and the insurance companies and says there is nothing he can do...

On my last visit, he told me, "Oh, your blood pressure is OK, but I'd like to see it lower. And you've gained a couple of pounds, you should exercise more. And, you sound depressed, I'd like to see you get out of the house more..."

You can imagine my reaction. But I only repeated what I told him before - I cannot do more exercise or leave the house more than what I'm doing, because my pain meds have been reduced to the point they don't work. If I can get pain meds that will actually work again, I would LOVE to be more active.

His reply was - "Well, your blood pressure and weight are OK. It's not important."

I don't want to try and find yet another doctor, there are no others near me who my insurance deals with that deal with RSD and pain meds at all, I've checked. I don't even know how I'd get to a more distant doctor, or how I'd handle all the costs involved with trying to get a new pain management plan started. No way insurance covers all of it, or even likely most. And even if I do that - how long before they move me to weaker pain meds again? It's happened over and over, even with all CLEAN drug tests. But I honestly don't know what else to do?

I feel like a hermit living in constant pain. I've even started to worry about one day not making it to the kitchen from my bedroom. Yesterday, I almost fell through a window because the pain was so bad while walking. I know this forced inactivity is hurting my health, and I'm starting to wonder if prolonged isolation is affecting my mental state?

Any thoughts or ideas at all would be appreciated. Sorry for the long read.
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Old 10-07-2019, 08:34 AM   #2
annabanana123
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I am so sorry you're dealing with this incompetent doctor. How many visits has it been since they switched you? I found my PM is reluctant to change things until it's been a few months (which sucks). I know you don't want to find a new doctor but that really may be your best bet unfortunately. Some doctors are running scared from the DEA. I have found that focusing on my reduced function and quality of life is more effective than asking for a particular medication for what it's worth.

Also OTC things like lidocaine patches when combined with meds helps somewhat. It might be worth a try while you wait for a better solution. Lyrica helps me, but not enough on its own.

Where are you located? Maybe someone here has a suggestion of a doctor. If not check out the group "CRPS" on facebook as they're full of awesome ideas too.
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