Misdiagnosed with Fibromyalgia?

[PodBee]

I was recently diagnosed with fibromalgia when I went in to see a specialist about temperature regulation issues, but I'm worried I've been misdiagnosed because the assessment was very brief and the symptoms I described were quite mild.

The doctor was one of those old men doctors that mostly talked at you and didn't really do much listening; he didn't really draw out the connection between my temperature issues and fibromalgia, I had to do this later on my own, and his assessment amounted to asking me some very brief questions and squeezing my pressure points (only one of them hurt and he squeezed pretty hard).

The reason I am questioning the diagnosis is because I just don't feel like I'm that prone to the chronic pain that characterises the disorder. The symptoms I identify with are mostly the secondary ones; I sweat excessively and am prone to hot flushes (I'm 22 so definitely not menopause related), but am also very sensitive to cold, very prone to extremely painful indigestion, need to pee frequently, often feel fatigued during the day (not all days but a significant amount, sometimes coffee helps), basically never feel refreshed when I wake up, and also possibly have the 'fibro fog' but still unsure (will get to this later).

The reason I got diagnosed is because I confirmed I'm prone to joint pain, but he never clarified this further and so I don't know if I actually qualify. I'm prone to back and shoulder pain but that's because the bag I carry to uni is pretty heavy and I get mild headaches, but no more so than the average person and often with an obvious cause like I've worn my hair up for too long. On a normal day I would rarely describe myself as 'in pain' but my joints do often feel stiff. I'm pretty fit and can run about 10ks if the weather's not too hot so I definitely don't relate to the physical exhaustion.

The reason I would like to nut this out is because if I do have fibromyalgia, it would explain why I feel so scatterbrained all the time. I wouldn't describe what I experience as a 'fog' (although on some days when I'm pretty depressed it can feel like I'm almost dissociating; those are rare though). But I do feel like there's a slight difference between me and the people around me in terms of cognitive functioning, so much so I was actually considering getting some tests done last year. I have a terrible memory and will often forget what I was trying to day mid sentence. I also feel like I'm really bad at making snap decisions and have a hard time concentrating while reading. There's been a few instances where someone has literally said a very clear, simple sentence to me and it took a couple of goes to say what I meant.

The problem is I feel like everyone experiences these cognitive things from time to time; I have so many friends that struggle to find words or forget things mid-sentence. And I know what I'm describing isn't as bad as people with fibro fog experience. It would just be such a relief to know that these feelings are legitimate, and that I have a reason for feeling this way. Often when I bring this up with people they dismiss me and say I'm being too hard on myself, but I feel it's genuine.

I'm seeing my GP in a couple of days but it would be nice to know what people that are familiar with fibromyalgia think about all these things. Any answer would be a big help and take a lot of this off my mind!

 

[sunkacola]

Hi PodBee, welcome to the forum, although I hope for your sake you don't end up staying here. (Meaning that you don't have fibromyalgia).

The thing is, your symptoms could be FM but just as easily could be a lot of other things, and also a lot of different things rather than there being one explanation for them all. You need to continue to explore this and experiment on your own as well as seeing other doctors.

I would suggest seeing a rheumatologist, for the joint pain.
Either cut your hair or wear it some other way, not up on your head.
Try a different backpack for your books, or even one of those small rolling bags that people take on airplanes.
If you are not taking medication for depression, consider that perhaps.

For the gastro-intentinal issues, experiment with your diet. Especially try going completely gluten free for a month and see if that makes a difference. Read labels obsessively and make sure you consume Zero gluten during that time.

Needing to pee frequently could possibly be a sign of diabetes. You could be allergic or intolerant to something you eat regularly so if it is not gluten, try going off all lactose for a month. Try other things, but only one at a time.

In other words, become your own researcher and advocate and lab and experimenter all at once. Come to your doctor's appointments armed with info you have gotten from your own body's response to what you try. That can help a lot.

Best of luck to you, and if it turns out you do get properly diagnosed with FM, (you are right to question what that doctor said, as he sounds as if he is not at all thorough) , we are here to help.

 

[Affinity]

I first got me diagnosis in 2014 and I brushed it off and just tried my best to manage my symptoms on my own without the support or a medical professional. I was diagnosed by a rheumatologist after experiencing ongoing joint pain. I thought the diagnosis was probably right but I also thought it was kind of a trendy bs diagnosis so I just went my own direction.

In 2019 I had some significant flare ups and asked to have my fibro diagnosis re-evaluated so that I could better address my ongoing symptoms, including brain fog and joint pain, tender points and temperature sensitivity. Before this flare up, in my late 40's, I was regularly running distances as far as 10K, although I was suffering from a lot of stiffness from over-exercising as well. The re-evaluation agreed with the previous diagnosis of fibromyalgia, again confirmed by my GP and another rheumatologist.

I only tell you this because I think it's important that you see getting a second opinion is a good idea and also that you can continue to be active even years after a fibro diagnosis, if that is what they decide you have. But if I were you I would definitely get a second opinion. Things like brain fog can sometimes be chalked up to lack of sleep of being preoccupied with something else but even if that's the case and it seems "normal" among your friends maybe they are not also experiencing your other symptoms and when you look at everything together you might discover that for you it adds up different than for them.

 

[PodBee]

Thanks for this! Yes I think a second opinion is key. I forgot to mention my indigestion has almost cleared up since taking dietary supplements so I agree it may just be a host of things that on the surface look like fibromyalgia.

I'll keep an eye on my joints with age in case anything changes, and seek second opinions for all the other symptoms. I may ask my gp to double check the 'brain fog' stuff now that I'm paying attention to it, although it's probably related to sleep issues now that I think about it.

Thanks for the help again! Take care

 

[JayCS]

I agree, after my first rheum. didn't diagnose fibro, but the second one four months later did (I'd made both appointments at the same time, the second one locally). Then still partly dissatisfied I've checked each single pain area, meaning 25 specialist-areas, plus a centre for rare diseases, and each of them helped a tiny bit, then asking someone else, getting further things checked. I'd also widened the "second opinion" on to asking the *same docs again a second time, after getting and refining ideas somewhere else (from myself, research, new blood checks somewhere else etc.) or letting time pass with no improvement and am surprised how most of them are open to this and also suggest new ideas themselves. They're people not machines. I'd already asked one of my dentists about my jaw pains, when I asked a second time, they did a full x-ray and found two root inflammations. Or on the 3rd or 4th visit to one of my psychiatrists, who's helping me with clinics, rehab and sharing his thoughts about physical things too, like bladder pain, I realised he must've been reading up on fibro a lot more deeply than the first time.
Brain fog / Sleep issues: in my case I think I've just become very very tired, need much more sleep, plus have a very disturbed sleep. But the sleep lab (above psychiatrist btw) didn't show much apart from too short deep sleep. Maybe I could/should call this feeling, which is extreme today 'brain/fibro fog' too? But doesn't make much difference I spose. What I'm trying is to get my sleep amount more reliable, trying CBD oil, cold showers, arnica cream and a hot water bottle. Cos I wouldn't have been able to work today, although I've had 9+ hours of sleep twice now, after a really bad night.

 

[Rndew]

How are your thyroid levels? Hypothyroidism can cause many of the symptoms you describe.