I just saw a new pain doc yesterday and she suggested that I try Topomax for pain and inflammation. I cannot take NSIADS or Lyrica, several other standard treatments failed to help. I really get in trouble when both my SI joints and my low facet joints in my spine (3.4.5) become inflamed at the same time. Cortisone injections every three months do not prevent these flares. Dr. claimed the the source of my SI joint pain is arthritis -- hmmm, that's a new one for me. The facet joint… read more
I did try Cymbalta but it caused me to be very tired. Whatever antidepressant works that is the one to take. I take the generic for Elavil called amitriptyline at night it helps depression but not pain. For pain, I take the generic for Subutex. I originally started with all the narcotics because they did help. I was unhappy with that because I would build tolerance levels. Subutex is a narcotic but works on the opiate receptors a bit differently. It is expensive and your insurance will probably need yearly or like my case every six months. My co pay for the generic called buprenorphine is $99./month. I also take a low dose amphetamine, the Name brand Adderall. I take it in the morning. It also helps because it also stimulates the brain. Being a nurse, I really hate the stigma of taking controlled substances. Finally I had to go on disability and take medicines. I do have a much better quality of life. Before that, I was working suffering, recovering and back to work. I truly hope I have helped.
NSAIDS will not help the pain of Fibromyalgia because it is not an inflammation issue.it is also not an autoimmune issue. Fibromyalgia is a central nervous system disorder. I have a bachelors degree in nursing but am not a physician. Always check everything with your doctor. In my research, this is what I found. In your spinal fluid there is substance called substance P. It is a neurotransmitter that sends pain singles to your brain. In patients like us, we have too many. When your hypothalamus receives those transmissions it is supposed to send endorphins (pain relief). However, we don't receive enough on top of too many substance P transmission. Serotonin and Dopamine and other transmitters in the brain are unbalanced and often there isn't enough. Antidepressants help because they inhibit the enzymes which break down neurotransmitters (to prevent transmitter overload). So, if you are not breaking down as much neurotransmitters, you have more to help increase the amount in the brain. I have been sick with this disease for over 13 years and have done much research. It is my belief that once you are diagnosed ( your primary care physician can diagnose it ) the best discipline to treat your symptoms is either a neurologist or psychiatrist. I use my psychiatrist because he was already treating my major depressive disorder ( MDD ).
I totally understand. I was a nurse for many years and the stress and physical
Part of it (lifting, etc. made it so much worse I had to quit,I really believe I picked up a lot of viruses. I had blood tests done and I had a lot of things I've never heard of. Unfortunately, the place I was going went out of business and I was unable to get my records. I know have so many more problems: diabetes, interstitial cystitis, blood pressure that keeps going higher (I think this is due to the pain), IBS. I've had thyroid cancer, and now have a brain tumor. They don't want to operate because it's in a dangerous place and say the surgery is one of the worst. I get horrible headaches and I don't know if this is from the tumor or fibro.
Elavil made me gain a lot of weight- which I cannot afford to do. My dr. Would never prescribe Adderal. So sorry for all the venting! I am truely glad you found some things that help you!
Yes, every nurse & Dr. Think we are drug seeking! Wish they could experience just one week of what we go through! Hugs to you!😊
I have a neurologist and a psychiatrist and of course, a p.c,p. I'm pretty sure that any least the pain in my facet joints is related to arthritis in my spine - same I am told with my SI joint pain. The cortisone injections act to reduce inflammation, yes? They are very useful but never last the full three month term. What specific meds act on substance P? Cymbalta did help with pain but not cognitive dysfunction - that is why we switched my anti-depressant to Trintellix and it has helped with cognition but not pain.
Hugs back! You would probably appreciate another story. In Sept both my SI joints and my facets joints (l3.4.5) were inflamed at the same time and obviously making things pretty miserable. On top of that, I developed all these knots in my neck, shoulders, and back - I was miserable and could not even walk for 1/4 without having to stop; after I stopped walking the pain only worsened. Feeling some desperation, I put my thinking cap on and mumbled to myself and my dog "wait! These are muscle spasms. You have Valium from your psychiatrist - try it! So I took a modest dose of Diazepam for a few nights and at least the knots resolved themselves. Off-label use of Diazepam - probably - and certainly not available from anyone other than my psychiatrist. I have plenty and don't even use it much any longer. I was actually not terribly impressed with the pain doc who recommended Topomax - for goodness sake, I live in the Boston area and find it very difficult to swallow the notion that "nothing can be done for the inflammation per se."
Can't take NSAIDS, can't take Lyrica... Thanks for your reassurance that in your judgement I saw a good pain doc.
The opiate scene, as you well know, keeps getting worse and worse. I predict backlashes - people may take too many NSIADS (that was actually the first "treatment" I had for Fibro and now I have stage 3 kidney disease and cannot take NSAIDS and the like. I also would not be surprised if some people who are suffering with chronic pain become desperate and turn to street drugs of various sorts. Of course, if they live to tell the tale, the docs will find their behavior to be a self-fulfilling prophecy - "you see, we told you that you were a drug seeker:" Ugh. Be as well as you can, Emily
PS: Have you tried Tramadol - considered as a low level opiate; I find it helpful for "maintenance pain" but not help for the intermittent terrible flares.
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