It seems from all the research I have done and everyone I have read the posts and comments from that very very little can be done for those suffering the symptoms of Fibromyalgia, and if one cannot use pain meds, what exactly is the benefit of pouring out to a doctor all that you are suffering so they can diagnose Fibromyalgia and offer no real help. Even google search does not recognize the spelling of this condition, just like the doctors don't really recognize it as a condition that they can diagnose except rather a label to put on a person when the cause of what they are suffering cannot be determined and everything else is ruled out. I have not been diagnosed as of yet because many of the symptoms I have told my dr about have gone unaddressed, I have not told her about the episodes of extreme, debilitating pain that washes over me or the all consuming exhaustion that follows because I cant take narcotic meds and I feel like if I did mention the pain she might think I am drug seeking. So is there any real benefit of a diagnosis? Also the conditions that share a majority of the same symptoms there is not much that can be done to treat them.
What exactly is the benefit - Fibromyalgia Acti...
What exactly is the benefit
couple of things and the easiest to address is google search as I find it does spell and recognise it?
secondly this is not an easy condition to have or be diagnosed with but there is often something that can help improve an individuals quality of life. Often when people have tried everything they have not and there is more open to them.
When there are categories of meds are inaccessible there are others or alternative treatments available. Its not an easy journey and one with dead ends and no map but it is worth travelling to find something that can help.
Oh, Ok, I mean you can't find Fibromyalgia on google, what I mean is when you type fibromyalgia, it is underlined with that red squiggly line that indicates it is a misspelled word, when you right click your mouse for spelling check google offers the word fibrillation(maybe that is only in my country though as I am not from the UK) so what I was trying to convey is that like google who doesn't recognize the spelling of the word, doctors don't recognize the condition as one that stand on its own but rather a label to apply to a set of symptoms when all other conditions with similar symptoms have been ruled out. Hope that makes better sense.
Also I was asking what benefit is a diagnosis from a dr, what can a doctor offer that I can't get from the multitude of internet resources available in the way of treatment options? Like medications that were developed to address the symptoms, I realize there are a few that already existed for other conditions such as depression that may work for some in taking care of some of the symptoms and are prescribed off-label in some cases, but depression is only one symptom.
I have found a great deal of suggestions from websites like this one, but I am just not sure I see a benefit to getting a diagnosis because it just seems like the medical community looks upon those whose primary complaint is pain but no source to validate the pain as difficult, whiny or drug seeking. I sincerely do not want to be viewed as any of those things by the person medically trained to help me. The one dr. I did express my pain to, asked me if I has told my psychiatrist about my pain. I felt like she was implying it was all in my head and to talk to the head doc about it. My psychiatrist did actually put fibromyalgia in my chart as a possible condition but could not offer me anything in the way of treatment.
Thank you for your quick reply as seeking alternative treatments and continuing the search being worth effort, that is what brought here and I am already felling a little better simply because unlike the doctor, I feel some validation in the knowledge that I am not alone.
There is alot of comorbid conditions common to fibro,, so from that point of view alone you really should have a diagnosis. eg IBS, Lupus, Pots, Depression, Anxiety, Eye problems and digestive issues.
It is often much more complicated than it is made out to be.
The love and understanding of a spouse, partner or friend can, and does, make a huge difference to life.
They are on that journey with you
x
That is so true and I'm very lucky to have such a good support network and of course everyone on here too. Take care Lynne
I'm a little confused by your answer, are you saying by getting a diagnosis from a dr, I will have more support from my husband?
I understand what your saying. Even Hough you are feeling all of these symptoms and issues getting a diagnosis from a doctor doesn't make the pain and tiredness etc go away. All they can do is prescribe drugs but the drugs don't always work. Even though you have a name or label for what your going through it doesn't solve the actual problem.
Am I correct?
I won't explain any further then.
I have felt the same way and questioned the benefit of diagnosis. I have a collection of illnesses that are in effect mystery illnesses with no known cause (ME ,Lupus ,Fibromyalgia ,Endometriosis ,Pericarditis, chronic migraine, Meningioma)
and so far Western doctors have offered me no real treatments that actually work. They have however given me drug therapies to try that have helped improve my quality of life and I think that is something.
Also it’s helped my husband and family understand me better, that I’m suffering with real illnesses and they support me better for knowing that.
I'm glad that you are getting some help to improve your quality of life and that family are supportive. Several of the conditions that you mention (Lupus, Fibro, Endometriosis) are believed by some to be autoimmune and migraine could be APS, amongst other things. There are therefore things that you can do yourself - I recommend The Autoimmune Fix by Tom O'Bryan, if you haven't read it already. Best wishes
I’ve just started using the recommendations listed in the Medical Medium by Anthony Williams, which is already helping my IBS, so I have some hope on the horizon thank you. Have you tried the Autoimmune fix yourself?
I watched Tom O'Bryan's Betrayal series a year or so ago, having already cut out gluten and dairy for other reasons, and it made so much sense of my steady accumulation of conditions and symptoms, so I bought the book as well when I could. I haven't done the diet strictly as per this book (I am AIP though) as I have other issues so it isn't the only book I use, but it is a good one (and useful for earlier stages and explaining to family and friends). Datis Kharrazian is worth following too, I think. Good luck to you.
It took many years of inconclusive tests and trying different treatments for me to be diagnosed with Fibromyalgia. Initially I was frustrated as I had to recognise that I wasn't going to get my longed for diagnosis and cure. Now I am glad, because I can remind myself I do have a reason for feeling this way; it isn't something I'm imagining or making up in my head. I don't have my magic cure, but now I have ideas and paths to explore to try to manage and perhaps improve my symptoms. I have a 'label' that I can use to explain to others, especially my loved ones and healthcare professionals, what my condition involves and what my needs are. Sadly not everyone is as supportive as I'd like, but by this stage frankly, if anyone isn't there to try to understand and support me, then they have no place in my life. I was saddened to read that you haven't shared your symptoms with your doctor. How are they supposed to help if they are working blind? Surely they need to know to be able to work with you towards managing your needs? Whilst I always try to be receptive I would reject any advice that I knew would not benefit me e.g. in your case the narcotic drugs you mentioned being no good to you. Medical experts have huge amounts of knowledge I don't have, but I am the expert on me and so I seek a partnership for my medical care. My gp is somone I can share ideas with, knowing they are there for me even if we don't seem to be getting anywhere. I have and will no doubt continue to meet people who do not recognise fibromyalgia or dismiss it as a hopeless case. I see that as their failing and move on... I hope that in time the condition will gain more awarness and respect, and hopefully mabe even some solutions; so yes, I do think my diagnosis was important.
I wish you luck finding a way to best manage your health and in getting some support.
I hear what you’re saying and I’ve felt the same. It’s hard when there isn’t a simple fix the doctor can give us. I avoided getting a diagnosis for years as I thought it was pointless and even detrimental to me in taking on a label. I don’t know about your situation but I needed confirmation of my illness to get benefits so I needed a diagnosis. So I got a diagnosis of ME which helped get the benefits but then there was more pain so they sent me to see the rheumatologist at the hospital to get the fibromyalgia diagnosis. It is a useless title as it really means what it’s not, but it is nice to know what it is not, as the mind becomes scared under so much pain. What the diagnosis did for me was validate my illness and gave me a piece of paper that said it’s not a psychological problem but a real illness diagnosed by a rheumatologist who was so knowledgable about the illness and confirmed what I knew. This made everything smoother at the doctors and with the benefits. It gave them a box they could tick. My doctor has been very helpful and has offered me lots of different pain medication and sleeping tablets, it’s taken quite a long time to find the right ones for me. I take melatonin to help me sleep which is wonderful as it’s a hormone no a benzodiazepine so it’s a natural sleep and I don’t wake up groggy! For pain I take codiene at night as it helps relax my muscles and tramadol during the day as I find it wakes me up. I couldn’t tolerate any of the patches or antidepressants or pregabalins. It’s nice to have a diagnosis as I now feel less of a fake and can quote a specialist in my explanation of my disease. It’s easy to feel a fake with this condition as sometimes I’m fine and I forget the worst times. Plus I look fine which is annoying! More people are saying they know someone with fibromyalgia now than “what’s that” so that helps. I hope this helps xxxx.
Looking "fine" is a curse with m.e./fibro,
apparently even after I had my large bowel removed the surgeon was trying to send me home after 2 days... I was looking so well! 🙈🙈🙈
I feel exactly the same. I was diagnosed 23 years ago with ‘probably post viral fatigue ‘. Which has continued to flare ever since. I recently had blood tests done yet again (previously about 3 years ago) to rule out any changes. The number of tests offered has diminished in that time, nhs cuts? On consulting the GP to find out if anything came up she suggested more exercise, asked if my mood was low and asked if antidepressants would be worth a try. I m on 10mg amitriptyline for neuropathic pain and she knows I don’t want to take anything stronger. I left feeling very low but knowing there is nothing she can do whether she diagnoses fibromyalgia or not.
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