ljimbo423
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I wonder if some of us would be better off going with a Fibromyalgia diagnosis. It seems to be taken more seriously than ME/CFS.
Is CFS the same illness as fibromyalgia: evaluating the ‘single syndrome’ hypothesis (Abbi and Natelson, 2012)
- Thread starter Pyrrhus
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I wonder if some of us would be better off going with a Fibromyalgia diagnosis. It seems to be taken more seriously than ME/CFS.
Rufous McKinney
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I had to sacrifice my last hoarded pain killer to get through a little biopsy moment earlier in the week.
Ten from the dentist lasted 3.5 years. I gotta get something to have for the really acute downfalls. So far I have no pain diagnosis in my chart and I wonder how this might backfire if I try to get some.
Marylib
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The thing that happened for fibromyalgia was Lyrica. It got approved as a treatment. Pregalbin I think...
Rufous McKinney
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how well does that actually work?
HI....Yes, the first breakthrough for pain (apart from amitriptyline) was gabapentin, but the doses were unknown. At that time (I don't know if this has changed) but tender points, questions about where pain was (neck, shoulders, back of head were some common ones), then past neurological surgeries bring their own specific types, wrists, fingers, headaches, were all common areas. All were often very painful, not just moderate.
Then as @Marylib says we started having the children of gabapentin come along. I'm on lyrica now and it does a better job of relieving pain than any of the other well known pain meds. For most of us, one of the three does what is needed. Gaba is an old epilepsy drug that was started as a crossover med for pain....I believe it was simply an idea that actually worked.
@Hufsamor....I don't know why they insist upon putting people through forceful exercise....I really don't. The type of walking that generally is kindest to us is gentle and we control it. Walk past 3 houses, if you can't tolerate that turn around and return home. Start with one or two if you have to....don't overdo it. I'm still recovering from numerous pelvic fractures so haven't even tried outside walking yet, but would like to return to it. My husband is at a different pace than I am and goes for an hour or more; I be in an ambulance if I tried that.
Right now my exercise is walking from the bedroom to the back porch and around the house if I'm feeling that I can do it. I also exercise in bed gently to stop the formation of blood clots.....go at your own pace. I'm not afraid to use the word "No" with the PT people (who no longer come b/c I can do everything I should). It's fine....I've only ever had one who really tried to push the limits.
Mind you this may all change, but I doubt it. My neurologist of many, many years recently died (he was the kindest, most helpful human being ever...his patients were so grateful). True, he couldn't cure most of his, and many had illnesses far worse than mine, but he listened and that alone was wonderful. He also realized that most of his patients would never get well, but he did what he could for us, was always up to date and I can only hope the next one is half as helpful. So, I wish you well in that regard and, especially, the exercise regimen. Just follow your heart and body (if you can). Yours, Lenora
Then as @Marylib says we started having the children of gabapentin come along. I'm on lyrica now and it does a better job of relieving pain than any of the other well known pain meds. For most of us, one of the three does what is needed. Gaba is an old epilepsy drug that was started as a crossover med for pain....I believe it was simply an idea that actually worked.
@Hufsamor....I don't know why they insist upon putting people through forceful exercise....I really don't. The type of walking that generally is kindest to us is gentle and we control it. Walk past 3 houses, if you can't tolerate that turn around and return home. Start with one or two if you have to....don't overdo it. I'm still recovering from numerous pelvic fractures so haven't even tried outside walking yet, but would like to return to it. My husband is at a different pace than I am and goes for an hour or more; I be in an ambulance if I tried that.
Right now my exercise is walking from the bedroom to the back porch and around the house if I'm feeling that I can do it. I also exercise in bed gently to stop the formation of blood clots.....go at your own pace. I'm not afraid to use the word "No" with the PT people (who no longer come b/c I can do everything I should). It's fine....I've only ever had one who really tried to push the limits.
Mind you this may all change, but I doubt it. My neurologist of many, many years recently died (he was the kindest, most helpful human being ever...his patients were so grateful). True, he couldn't cure most of his, and many had illnesses far worse than mine, but he listened and that alone was wonderful. He also realized that most of his patients would never get well, but he did what he could for us, was always up to date and I can only hope the next one is half as helpful. So, I wish you well in that regard and, especially, the exercise regimen. Just follow your heart and body (if you can). Yours, Lenora
Funny, a PT (in myofascial therapy, mind you) was one of the first to diagnose me with ME in addition to the CFS. My neurologist agreed 100% and it was all brand new (again!) then. The only alternative therapy that ever helped me over a period of many years was acupressure & then Ace ice packs.
Today I keep the FM pain under control with the use of lyria. I was in a trial group of patients who went from amitriptyline (elavil) to gabapentin and many years later I had to try lrica. It takes a long time for the pain to clear on gaba (3 mos. or more in my case) and lyrica worked immediately, or shortly afterwards (but that may be because gaba cleared the way). CFS is an ongoing problem....well both are, just various degrees at different times. I developed FM around the time of my first surgery....a very difficult one.
I worked while I had my neurological illnesses (that had finally made themselves known, or I became aware of them) around the time of my first surgery. This was an extremely painful business, but it wasn't just trigger points that were affected. There were days when I simply couldn't move at all b/c of the pain. Terrible pain.
CFS (ME) is totally different again and yes, I could tell the two apart. I believe that a virus is somehow involved plus something else....in many cases, spinal surgery, neck surgery or even brain surgery.
Not everyone is "primed" for it, but many of us are. With FM you can actually feel knots under the skin, sometimes they cause an "ouch" sensation, other times they don't, but the pain is deeper than the knots. Most of mine have disappeared....is that the lyrica at work (a good question that I don't have the answer to).
PT did help me with my problems with swallowing, coughing and other difficulties....but if they insist on heavy physical exercise, I will draw the line. However, I've been at this particular game for many years....it's harder for new people and I realize that. Yours, Lenora
Today I keep the FM pain under control with the use of lyria. I was in a trial group of patients who went from amitriptyline (elavil) to gabapentin and many years later I had to try lrica. It takes a long time for the pain to clear on gaba (3 mos. or more in my case) and lyrica worked immediately, or shortly afterwards (but that may be because gaba cleared the way). CFS is an ongoing problem....well both are, just various degrees at different times. I developed FM around the time of my first surgery....a very difficult one.
I worked while I had my neurological illnesses (that had finally made themselves known, or I became aware of them) around the time of my first surgery. This was an extremely painful business, but it wasn't just trigger points that were affected. There were days when I simply couldn't move at all b/c of the pain. Terrible pain.
CFS (ME) is totally different again and yes, I could tell the two apart. I believe that a virus is somehow involved plus something else....in many cases, spinal surgery, neck surgery or even brain surgery.
Not everyone is "primed" for it, but many of us are. With FM you can actually feel knots under the skin, sometimes they cause an "ouch" sensation, other times they don't, but the pain is deeper than the knots. Most of mine have disappeared....is that the lyrica at work (a good question that I don't have the answer to).
PT did help me with my problems with swallowing, coughing and other difficulties....but if they insist on heavy physical exercise, I will draw the line. However, I've been at this particular game for many years....it's harder for new people and I realize that. Yours, Lenora
Rufous McKinney
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my warning is: never do this 2 days in a row. I made that mistake and had a 60 day crash.
A shop with herbal medicines and buddhas is exactly one block from here. Thats a new goal: can I just go one block, then sit down there and recover then walk back.
Hi @Consul.....yes, there are a few singers and actors who have ME (as they're both lumped together). We owe them thanks for some of the research money that has come in over the years.
I believe that in Lady Gaga's case she does occasionally step back and her tours aren't as long as they used to be. She hires plenty of people to help prepare her shows. Who knows? Perhaps that's one of the reasons she's trying to develop more of a film career. I can understand if that is the case.
I just wish we could do a better job of coordinating research funds. Companies giving double the amount of $ donated on a certain day used to be far more common. You still hear of them, but not nearly as often. I'm not involved in so many aspects any longer but admire those who are actively volunteering. Yours, Lenora
Marylib
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I never tried it.
Rufous McKinney
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Me either, no thanks, read those side effects.....
My pain is "manageable". (except for when its not)
I'm lucky I dont get "migraines" and I can do odd things like apply these magnets to reduce the BLETCHY ongoing headache/neck ache/eyes aching...Oh I need pain a pain killer right now........or take a hot bath or....b-caryophyelene helps pain...applied topically.
My pain is "manageable". (except for when its not)
I'm lucky I dont get "migraines" and I can do odd things like apply these magnets to reduce the BLETCHY ongoing headache/neck ache/eyes aching...Oh I need pain a pain killer right now........or take a hot bath or....b-caryophyelene helps pain...applied topically.
Rufous McKinney
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I witnessed my GP attempt to get a pill approved..by my insurer. Friday afternoon 5 pm: 25 minutes on the phone, my Doctor on hold, MUSAK and six different parties he tells all the same info to...so I recall he told this final person I had tried Lyrica....and a host of other things (having nothing to do with the pill we needed approved). It was all very odd. Then they denied us.
Wow, my doctor is run around like this wringer by the insurer, too? No wonder.......
Yes, that's exactly what goes on....and we blame the doctors when the insurance cos. and govt. are essentially the ones to blame.
Either change the laws to make all things equal or just get out of the way and let doctors be doctors without all the interminable permissions and denials. No wonder our medical system's in the trouble it is. Yours, Lenora
Either change the laws to make all things equal or just get out of the way and let doctors be doctors without all the interminable permissions and denials. No wonder our medical system's in the trouble it is. Yours, Lenora
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