After years and years of back and forth, a rheumatology physiotherapist at the IMSK clinic has come to the conclusion that I “most likely have fibromyalgia”. He came to this conclusion on our first meeting with no physical examination done at all. My rheumatologist has said it’s probable that it’s fibro but would like to do more tests (MRI of the whole spine and nerve conduction and EMG studies). I also have hypermobile EDS and intermittent high Creatinine Kinase levels. He’s written to the GP recommending medication be started to see if I get any relief. He has suggested amitriptyline, duloxetine or pregabalin.
I am struggling a little bit accepting the “diagnosis” as I feel like there’s avenues still left to be explored and the way that the physiotherapist explained it was it was “all in my head”. He sent me off with a leaflet called ‘turning down the volume on pain’….. I’m not trying to take away from anybody's illness/condition at all but a quick search on google shows it’s one of those conditions that some medical professionals deny is “real”. I also can’t imagine another 40+ years of my life feeling like I feel most days.
Did anyone else feel this way? Like they’ve almost run out of ideas and so that’s a nice label that fits? How did you come to terms with it?
Has anyone had the nerve conduction studies? If so, how was it? What should I prepare myself for?
How did you discuss medication? Pros/cons/side effects? I have been on various antidepressants/anti-anxiety medication before and never found one that works and agrees with me so I am all but sure I will say no to duloxetine straight away (need to research the other two more).
hi , best to avoid all meds if you can they just poison the body and increase toxicity , toxins cause an inflamed nervous system causing further pain , best just to eat healthy and try and exercise when up to it , seems everyone on this site is hooked on prescription drugs , its not the answer
thank you for the response. I eat healthy, rarely drink, weight train 4 times a week and have weekly acupuncture. I’m not 100% set on medication and have been researching options but all of above still leaves me unable to walk properly most days and feel permanently exhausted. The only slight relief I get is immediately after the gym when the dumbbells activate the happy hormones.
Hi there , I would like to say, with due respect, that your opinion on Medication may well suit you.
There are however people on this forum who live a healthy life, and exercise, and pace themselves, who choose to “poison their body” because otherwise they might not be able to get out of bed in the morning !
Fibromyalgia is not a one size fits all when it comes to treatment, everyone is is affected differently, and the same goes for treatments.
We aim on this forum to support each other, and Hidden is reaching out for support, and suggestions from other people, and your advice is rather unhelpful.
well you say advice , im giving my advice so your argument is flawed , I have had fibro all my 60 years , have pretty much tried everything within reason and perhaps occasionally not within reason , yes certainly meds play a part with some people , but as I said they simply pump more toxins into the body which causes more pain , If you dont like hearing the facts then simply ignore my input / content , rather than object to it !
Greenpeace well said, I also think that biker's comments are rather negative and not sure at all helpful. I try to keep my intake of medication low but some days I just wouldn't be able to function without them.
I presume you are not a doctor? Please understand that telling others to not take medication due to it being ‘toxic’ is unhelpful and downright dangerous in certain situations.
Many people have exhausted their self help options and are trying their best to manage their condition. Just because you are able to manage without medication does not mean others can. Taking meds can be the difference between someone being able to get up each morning or not. You wouldn’t tell a diabetic not to take their insulin, so you can’t say the same to others with invisible disabilities over the internet.
Had fibro all my life , have done meds have done pretty much everything , no one repeat no one has tried to take of this curse more than me , cant move for t- shirts ! , im not saying dont take meds at all, but there is no meds available that really helps fibro ,
im giving my opinion and my best advise making it clear to everyone that meds are basically poisoning their bodies by increasing toxicity , which inflames the nervous system which in turn increases pain
Hi biker888 we tend to be less confrontational as it is a support site and no one person's situation will be a predictor for another. Your body's reaction to meds will be different than others. There are meds that help people but we are bad at knowing which med will help which person.
Some have great success with meds and their life changes as a result and can be fully productive. There will also be people on here with more experience of fibro than you, but that experience may or may not translate.
Equating medications to poison is very pejorative and may put people off taking something that is helping them and making them worse off. We would not say it to a diabetic so please do not say it to people on here.
strange isnt it not how the majority tend to admit that medication has had no help for them and indeed if anything has made them worse ! , so many taking meds for different factors that fibro causes, fibro causes lots of serious issues , trying to treat the ones that are giving the most concern is not the way to go , however it is fully understandable as Ive been there myself , had fibro 60 years so pls dont lecture me !
Hi there, please may I ask you to moderate your tone. And please may I ask you to not lecture members about taking medications based on your own experiences.
To tell others they should not take meds due to toxicity based on our own experience is not really exceptable and could be dangerous has desquinn has already pointed out.
Been angry and rude to others is not what our group is about.
I would not like to see this thread closed down due to one members anger and aggressive behaviour thank you for your understanding in this matter.
Perhaps the physio was considering the fact that hEDS & fibro can co-exist, so therefore thought fibro also likely. Fibro certainly isn't 'all in your head' in the sense that you're imagining it, but, as someone also with hEDS, we have to find ways to cope with chronic pain. In that sense he is correct, & everyone has to find out what works best for them. As a retired physio, I'm with you on exercising, but perhaps you haven't learnt to pace yourself, which is important for both hEDS & fibro.
I would agree that the 'Turning down the Volume on Pain' leaflet isn't the best, but it's trying to illustrate that it's the brain that perceives pain, which isn't from an acute injury, which is helpful, but is sort of amplified when chronic pain is involved, so we need to find ways to turn down this hypersensitivity.
You're doing all the right sort of things physically (good nutrition, etc), but you need to look at ways to also help you mentally, as both physical & mental health are intertwined. Be open to seeing if your GP can help with medications. Personally I find that Pregabalin helps to dampen down my pain (tho I have neuropathic pain due to Chiari 1 Malformation which is associated in a few of us with EDS), but also use CBD, distraction & mindfulness. I couldn't tolerate either amitriptyline or nortriptyline as they lowered my already low blood pressure, & NSAIDs don't seem to work with either hEDS or fibro.
I've had 2 nerve conduction tests; no preparation needed, & they're painless.
Some 20 years ago, fibro did indeed often seem to be a 'waste basket' diagnosis. Hopefully things have now changed for the better.
hello, thank you for your response. you are absolutely correct about the pacing myself. Part of what I am struggling with is feeling like my “normal” life I should be able to have at 32 years old is been taken from me. As such I do not listen to my body when it’s protesting and telling me I need to rest and do the complete opposite! Yet never learn from the consequences of my actions 🙈
the reason I was sent to the physiotherapist was regarding the hEDS and ways to strengthen the joints/surrounding areas. We didn’t actually discuss any of this so I’m still no more informed on that topic. I just try to limit exposure to anything high impact and focus on controlling the movements I do whilst training.
I have tried CBD with limited success but do find that meditation and reading help the mind. I am trying to keep an open mind to the GP appointment and what they may suggest, I just don’t really know what questions I should be asking regarding the long term picture.
Thanks again for your response, it’s nice to know there’s people that understand. Pain can be lonely 💜
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