4 ms·

If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for tre

If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?

shakna 6y ago
I'm loathe to answer this question. I'm not a doctor. Where you live, and how the disease is impacting you, will change the answer. Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little. I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist. --- However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations. FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality. This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal. A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary. Having a team of specialists that communicate is probably the most helpful safety net.
- will_pseudonym 6y ago
  Thank you for your reply. It's about in line with my experience. I think my frustration so far isn't in the expectation of being cured, but in not have any treatment giving any kind of relief that's not measured in minutes, even just taking the edge off of the pain, as you described. I will definitely take to heart the suggestion of tempering my expectations. Thanks again for sharing.
  - shakna 6y ago
    For what it's worth on the expectation side of things, it took six months for me to begin seeing an improvement as mild as taking the edge off my pain. My recovery times from relapses are generally 18-24 months. It took me a very long time to come to terms with how slow moving things are, and it's entirely okay to not feel okay about that.

If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?

shakna 6y ago

I'm loathe to answer this question. I'm not a doctor. Where you live, and how the disease is impacting you, will change the answer. Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little. I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist. --- However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations. FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality. This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal. A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary. Having a team of specialists that communicate is probably the most helpful safety net.

will_pseudonym 6y ago
Thank you for your reply. It's about in line with my experience. I think my frustration so far isn't in the expectation of being cured, but in not have any treatment giving any kind of relief that's not measured in minutes, even just taking the edge off of the pain, as you described. I will definitely take to heart the suggestion of tempering my expectations. Thanks again for sharing.
- shakna 6y ago
  For what it's worth on the expectation side of things, it took six months for me to begin seeing an improvement as mild as taking the edge off my pain. My recovery times from relapses are generally 18-24 months. It took me a very long time to come to terms with how slow moving things are, and it's entirely okay to not feel okay about that.