Fibromyalgia

I was really annoyed, oh, I was just so, it just feels like I’ve spent, this has, this has been going on now since 2002, so that’s 17 years I’ve had fibromyalgia, and I’m still not getting any treatment for it that works. I don’t know if there is any treatment that works, and that’s problem because my doctor’s never told me, no-one’s ever explained fibromyalgia other than the leaflet, and I bought a book about it. But that doesn’t you know, you, it’s hard to, sometimes to get the information out a book and refer it to you because people’s symptoms differ. So yeah, annoying, very annoying.

I did a, a fibro, a fibro something, fibro net was it? You know, an American thing I think it was, support group but that was crap, really, really crap, so I don’t do that anymore. But I didn’t know where else to find anything so I’ve not done anything else.

So what kind of information do you think is really important to know or, at different time points as well, so at the diagnosis you just got a leaflet, but it’s still now after 17 years you would still like to get information?

Yes.

Yeah, what kind of information would be important for you at the moment?

How to cope with pain.

And then I also found that after a while, a lot of the websites were American, so you would type things in and you’d get a lot of things from America. And it’s you know the typical pictures of, you know, the white male in his white coat, sort of smiling at you, saying, ‘I’m an MD,’ or whatever, and you just think… I don’t know just, I think the imagery of having that person photoshopped onto the webpage and sort of that that kind of… sort of, suggestions for remedies, or the fact that they will say, ‘Here’s a cure for fibromyalgia,’ and you sit there and think, ‘Why are you using the word ‘cure’ when it can’t be?’ you know? For me, the word ‘management’ is better even than ‘treatment’. I think management is kind of what helps.

Well website wise or articles I look at the spelling and I look at the source. If the spelling is a bit dodgy and the grammar and things I will say, “That’s rubbish you know, that is written by someone who just wants to make a bit of money writing an article”. I look at the source and if it’s a reputable source like sometimes news websites will put out an article about fibro and it’s totally wrong, so that’s not a reputable source. Whereas if it’s a health organisation you know, that might be a bit more trustworthy.

There are a lot of blind spots with fibro, there are a lot of things that people still don’t know, so a lot of it is speculation. So when someone says, I mean even just today someone says, “Do you think it was, your injections as a child that gave you fibro?” and you know, people are coming on and agreeing and I’m like, “But we don’t know that. Where is the evidence?” and other people are saying, “Have you had a trauma in your life and then got fibromyalgia afterwards?” Well I’ve had a lot of trauma in my life but I don’t know if that is what has caused my fibro.

You know, I try and think logically and if I read the article and it makes sense to me, I look at the source and if the source seems, if I don’t understand where, what the source is I will look it up you know.

A lot of my uni work taught me how to look up credible sources, so that, that’s how I know to do that, otherwise I wouldn’t have a clue and would just believe everything I read you know, “Did you break your leg?” “Yeah”, “And now you have fibro” you know. A lot of people are saying, “I broke my leg when I was younger now 20 years later I have fibromyalgia, I think that’s what caused it”, well you don’t know that.

So it’s you know, check your sources, check the grammar, the spelling and check that you know, the information is credible you know, that’s the only thing I can say about that.

So I went to my GP at some point in I think September of 2018 and I said to her, “I have all of these problems”, half of them I hadn’t even mentioned to her before because it didn’t occur to me that it was relevant, and I was just like, “I’ve been looking into this and I think that there’s a chance that I either have fibromyalgia or chronic fatigue syndrome. I don’t know what you think, but these are the things that I like have researched, and these are the symptoms that I have. What is next?” And she was basically just like, “Yep, I agree”.

So thankfully I already knew quite a lot about it because I had been researching it on my own and I read a lot of medical papers in terms of like what we actually know about fibromyalgia and how to best deal with the various symptoms. And I just kind of led my own treatment from there, so I would go to my GP and say, “I have this kind of pain, I think that this might help, what do you think?” and then she would say, “Yes” or “No”, or suggest something better.

So at this point I have managed to get, a medication that prevents my migraines, I am on, another medication for low mood, especially because I’m, I have comorbid depression and other mood disorders which I’ve had since I was 16 as well.

Well yes, I’d had this strange thing for quite some time and it was really annoying me because I seemed, as I’ve said, to have all these very peculiar unrelated symptoms. And, and then actually I went to visit my sister and, she just left me a magazine out to read while I was there, and interestingly in the back, under your sort of Dear Doctor things, there was here a thing about fibromyalgia. And I read that and basically it said exactly all these symptoms that I’ve just been talking about, and all of these peculiar things, it didn’t just say some things that seemed to be connected, just everything I’d been talking about was suddenly in this magazine in front of me.

It was mainly NHS websites, Arthritis UK, I would just do a fibromyalgia search and just look at whatever came up. The, it was usually the sites that didn’t have too much jargon, the ones that just pinpointed the symptoms.

Did you feel like, because some of the participants told us that, you know, when they’ve went online to look for information that they… differentiated between what they called dodgy websites and websites they trusted, how do you feel about that?

Well, there’s always those websites that you’ll go onto that give you all this and direct you towards using a certain product. Which, yeah, I think I’m probably guilty of in the past, using stuff because it said this is a miracle cure for whatever, you know? I think I’m a bit more savvy now when it comes to that. But I stuck to the ones that were more factual about illness, I thought if I had the facts then I’d know the right questions to ask when I go to my doctor or my consultant. Because I’m already taking some very serious medication, I don’t want to go down the road of taking something that’s going to have a contrast with anything I’m taking because I value the way I’m feeling now compared to the way I was feeling before. I mean, I can… you know, I’m quite mobile.

Well to be honest with you, I don’t gather information about fibromyalgia because sometimes knowing too much about something can be a bad thing. When I was diagnosed I decided on a certain plan of action that has suited my lifestyle and I’ve continued with that. So I don’t constantly research it or look it up because I don’t see the need, there’s not been any miracle cure. Occasionally I would read an article about it, but it has not necessarily improved my situation so I disregard it. What works for me is what I do and there’s not been any major changes in what they do for fibromyalgia, so.

I tried to Google it and read up more on it, and then sometimes I feel like personally is if you go start looking at things and there’s sometimes, I think makes me worse. Well the same as like for example, you get medication, I don’t read the side effects on that because I think you’ll be self-suggestive, you’re going to get side effects. And sometimes well reading on these forums and things, you always get somebody that’s always domineering and it’s, “Me, me, me, me, me, me”, and I just can’t deal with that, and it’s just, I can’t, like things like that, like groups.