Does Anyone Else Believe They Have Something Else Than Fibromyalgia? | MyFibroTeam

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Does Anyone Else Believe They Have Something Else Than Fibromyalgia?
A MyFibroTeam Member asked a question 💭

I feel like I've been given the fibromyaglia term only because no one actually finds a cause to all my symptoms. But I don't know what else it could be. I feel like it is some type of arthritis other than RA or the other common ones. What do you guys think about that?

posted January 7, 2017
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A MyFibroTeam Member

Fibro is not just about the tender points and trigger points. It is widespread pain that can affect muscles, tendons and ligaments. All soft tissues. Unlike arthritis which affects joints and can usually be diagnosed with Bloodwork and seen on X-rays etc... The longer you've had arthritis the more damage to your joints can usually be seen. Unlike Fibro no matter how long you've had it you will not see any changes to your body even with MRI's. The pain runs rampant in your body and when a flare is over can feel like you've never had anything wrong with that area at all. That's why they can say it will not cripple or kill you. If you are flaring for years in your back and lower extremities you may need to walk with a cane or even use a wheelchair. At anytime the flare can move to another part of your body and you will no longer need the wheelchair. Speaking from experience. Or it can be all over your body and you are mostly bedridden like I have been on and off these past 19 years. Most if not all medication fails to touch the pain of flares. It does however at times take the edge off and if we have arthritis it will decrease that pain giving us the idea it is helping Fibro. I've been living with Fibro In one degree or another since I was 12 (maybe younger as my body always hurt especially my legs) and I'm 62 now. I was diagnosed in 1982 and my doctor called it Fibrositis at the time. Today all kinds of tests are usually run to eliminate any other type of diseases/illnesses. At least I hope your doctor is. Hope this helps. Gentle hugs.

posted January 8, 2017
A MyFibroTeam Member

I will admit I am a bit wary of so called diagnoses these days, after being told I also had Crohns, then not, then I do, then maybe I do but let's not call it that, .....ugh, really medicine just seems to be a guessing game. With FM, it covers all the bases for me whereas before no doctor paid attention to the symptoms they couldn't explain, so a lot of stuff got ignored.
My issue with the FM diagnosis is it still feels very vague, like an easy label doctors can slap on someone that has been dumped in the too hard basket. And then every health complaint after that just gets the "oh yeah that's just the Fibro" label. The understanding of FM in the medical community is pretty hit and miss, and much of it comes down to a doctors personal opinion which is not good enough to me. Some of the criteria used for arriving at a Fibro diagnosis is too based on doctors best guess rather than actual science, but I guess until they know more about this, we have to expect this.
I guess in short, I am a little conflicted on the subject. Lol.

posted January 8, 2017
A MyFibroTeam Member

For me I got a diagnosis of fibro..Lupus and psoriatic arthritis. Apparently the systems can overlap and it's common to have more than a couple of illnesses because they can be related. Hope you get it sorted out because the clearer picture you have of whats going on... The more you can try to find ways to treat it.

posted January 10, 2017
A MyFibroTeam Member

@A MyFibroTeam Member, you're right, it is all down to a chronic sensitisation of the central nervous system, which means your symptoms could really be anything at all. Question for you: do you have any issues with sleep? It has become my focus point in order to fix or reduce the severity of other symptoms.
I rave on an on about this book, people are probably sick if hearing about it, but it changed my whole perspective and understanding of FM: The Fibro Manual by Dr. Ginevra Liptan. If you haven't read it, get yourself a copy. It's not the only book out there but this Dr has FM, and now treats it in others as her specialty (has opened her own clinic). You might even relate to it more than most of us as she was diagnosed when she was a med student, and she describes the struggle she went through.
I guess at the end of the day, Fibro might be the name they have given your condition but as long as they are only treating the symptoms (which is all they can do so far), then you are safe enough from any lasting damage from incorrect diagnosis if that's what you are worried about. For me, I haven't put too much faith in treatment from western medicine, I use it, but I also go to other modalities and I am better for it. Naturopathy, Chiropractic, Acupuncture, Osteopathy, Remedial Massage, Pilates: they are all of benefit. I realise you are a pharmacy student, and that your career will be within western medicine, but I know a lot of people, myself especially, who have not only received massive benefit from stepping outside of WMed, but also learned so much about Fibro from different angles. It's been quite an education. I hope this helps.

posted January 8, 2017
A MyFibroTeam Member

Yes anxiety is probably enhancing all my symptoms. I started school yesterday and already I have much more pain. I have seen a rheumatologist. He vaguely said that it looked like fibro. It didn't seem much "official", but I did so many tests and everything was normal so... I'm sorry you were diagnosed with reiter. But it's truly amazing to see people with chronic pain and other health issues able to raise their kids! I feel so dependant on everyone that I don't see myself taking care of another human being... anyways, as for falling I've played pretty hardcore soccer, I would throw myself everywhere. But I never really had an injury except for sprained ankle. I haven't seen a neurologist but I have done an MRI of my cervical region and everything seemed fine. My chiropractor (who's also my aunt) thinks I just have a musculoskeletal fragility that developed itself prior to initial injuries.

posted January 10, 2017

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