Fibro? or is it something else?

Sjaakafhaak

New member
Joined
Nov 19, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
NL
Dear all,

I have been having health issues for over 10 years, ranging from tinnitus, dry eyes, heart pounding, hearing problems etc. I have never been in a state of "being OK" health-wise, but it is always getting worse. Now I have some new complaints, and my physiotherapist told me it might be Fibromyalgia. However, I got the feeling that it was more a "I don't know what else so it must be fibro" type of diagnosis. I hope that someone could

In 2014 I had a first episode of intense (mostly mental) fatigue. This lasted for over 2 years, with particularly bad and better days.
In 2017, after a year of being "ok", I had a first relapse. I had intense upper-back pain, leading to stress and at some point the extreme mental fatigue came back. THe upper back-pain never fully left, but did reduce enough that after 1,5 years at the end of 2018 I could manage my life with it. Only when I was sitting somewhere without back support it was an issue. The fatigue left for about 80%. I was having most of my life back.

Now the Fibro-part.

Now, in 2020; the upper back-pain came back and this time, even with back support I cannot easily sit straight up in a chair. Leg-wise I could walk for about 2 hours, but my back is killing me after 20-30 minutes. My lower back is doing a bit better, but also comes up when doing certain postures. This is sometimes an issue lying in bed (especially on my back). The pain is mostly behind my shoulder blades and is now present for about 5 weeks. It gets less with rest, but when standing up it comes back in about 10 minutes.
Besides this I noticed that all my joints started popping/cracking. I think its mostly the tendons, but it ranges from feet, hands and most annoyingly my shoulders/back/neck. The popping pain is not extreme, but it is annoying. I also happen to have muscle pains especially in my right shoulder, but also a bit on the left and some spots (top-right shoulder and left hip) are sore. For the rest it seems to be ok pain-wise (hence my doubt).
Besides these types of pains I also have a more general feeling of "not being ok". my skin is a bit burning and sensitive (but it could be from the hot showers I took 3x a day).
Ow and most nights I can sleep in pretty OK, but I wake up between 02:00 and 04:00 every night. Most nights I can get back to sleep again, bot sometimes not leading to additional fatigue the next day.
Could this be fibro? I don't seem to really frit the diagnostics criteria and cannot really relate to everyone on this site. Or could it just be stress?
I am now getting in a phase where I am starting to freak out which is of course not really a good thing to do...

I hope someone can help me find out whether I am on the good track. I should wait for the doctors etc. but as I am kinda stressed out I would like to ask you if you can relate to my story or when it is probably something else?
 

LadyofGod53

New member
Joined
Nov 23, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
03/2017
Country
US
Can be many things I guess, rheumatoid, lupus, fibromyalgia, menopause??? Have you got any answers yet? I go through arthritis menopause fibromyalgia Hashimoto thyroiditis.. so so many of your symptoms sound familiar to me. I used to have symptoms where it felt like I was dying like all the blood was leaving my body .. so I have been through a lot.. hope you find answers God bless you
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,060
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
It could be fibro and it equally could be many other things.
What you need to do is get tested for all of the things it could be, because a diagnosis of fibro is only made by eliminating all the other things. So, make an appointment today and get started with that.

And, yes, ultimately fibromyalgia is pretty much a diagnosis of "we can't find what is wrong so it must be...", simply because there's no definitive test for fibro. What you are experiencing could as you say be stress, but stress is a huge factor in many types of disorders and illnesses, so my first suggestion would be that you do everything you can to manage your stress level and reduce it as best you can. the worst thing you can do for yourself is freak out. So work on the stress first and foremost and see if that helps, while you are going through the testing process.
 

Sjaakafhaak

New member
Joined
Nov 19, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
NL
thnx for your responses, Bloodwork was all negative. GP told me I have somatic disorder so my mind creates actual symptoms. They are not in the mind as I can show actual Physical stuff going wrong, but the mind is the trigger so to speak. he told me Fibro was also such a disorder. Not that its not real, just that it comes from the mind...

I highly doubt this theory but cannot really present an alternative. Plus, no matter what, I don’t know what to do... I am sort of panicking right now...
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
305
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
thnx for your responses, Bloodwork was all negative. GP told me I have somatic disorder so my mind creates actual symptoms. They are not in the mind as I can show actual Physical stuff going wrong, but the mind is the trigger so to speak. he told me Fibro was also such a disorder. Not that its not real, just that it comes from the mind...

I highly doubt this theory but cannot really present an alternative. Plus, no matter what, I don’t know what to do... I am sort of panicking right now...
Hey there,
'all' negative might not be enough: 2 rheums, endocrinologist, cardio, urologist & nephrologist all checked my blood. Only cardio found something (really big, but unrelated to the rest, genetic hyperlipidemia). But the centre for rare diseases took 12! tubes and found auto-immune stuff the others didn't...
The mind is sometimes capable of producing 'actual physical stuff going wrong', if you read Oliver Sacks, I agree up to there.
I think almost all of us as well as most docs will however very much disagree that fibro is a somatic disorder in this sense, even tho some docs may (still) claim this. So I think your GP is definitely wrong there, if I'm not missing anything. Some newer research hints that the (real) pain is not coming from where we think it is, but I'm wary of trusting this that quickly. Perhaps that is what he means, but a sound-minded doc is or should be more careful about jumping to conclusions.
What may be influencing his opinion is that according to studies, in about 20% of us, childhood psychological problems, perhaps with traumata, perhaps leading to PTSD, and similar may have contributed to getting the fibro. Quite a few of us say that that might be right in their case. If a doc asked me if that is a possibility, I would consider it (if he told me I would probably not ;->) and in any case I would try counselling.
As sunkacola says: Stress & panicking will definitely not help at all. *You don't need to present an alternative. Your doc should help you "prove" what it is, by helping you get other specialists to make sure it isn't anything else. Whatever it is there is a lot you could try to do about it (including self-acceptance and self-care) instead of worrying and stressing. If you don't think what your doc suggests fits, you could get a new, good one, who fits to you. If your physiotherapist isn't helping enough, you could look for a better one (perhaps gentler, if it is fibro), like osteopathy, acupressure, acupuncture. (About 12 physiotherapists (incl. in a rheum. clinic) tried to help me and most thought they knew how to treat fibro, but all made it worse apart from osteopaths and acupressurists, who helped me get a lot of my pains down).
If you're not in the position to get your stress down and cope with your fatigue yourself, use self-help guidebooks, forum-help and/or a good counsellor. And while you haven't got these 3, get to know your body better (see sunkacola's advice post) etc...
Breathing exercises, yoga, tai chi, meditation and other calming techniques could be your starting point...
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,060
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
What may be influencing his opinion is that according to studies, in about 20% of us, childhood psychological problems, perhaps with traumata, perhaps leading to PTSD, and similar may have contributed to getting the fibro. Quite a few of us say that that might be right in their case.
The thing with this is that if you were to survey the entire population of say, the USA, ad if people responded honestly, I would bet real money that at least 20% or more of the entire population has suffered childhood trauma of one kind or another. So if 20% of people with FM have that in their history I don't personally think that really means anything at all. For instance, 25% of adult women have experienced sexual abuse, most in their youth or childhood.

I'm not saying it's impossible for it to be a factor. But one needs to take the numbers in the context of the whole picture. I think that doctor is being dismissive in saying that.

I am all for getting psychological assistance in some form of therapy if that helps or seems like a good idea. I did that, in fact did a lot of it, and some of it helped me a great deal, although here I am with chronic pain anyway. I'd not take back the time I spent doing some of it, though, the part that helped me, because mentally it was of benefit. I will also say that most of the professionals in the mental health field I saw over many years did me more harm than good, so it's very important to find someone who is not pushy and doesn't blame the victim and who is otherwise a good fit for the individual receiving care.

I do not agree that the mind is the trigger for FM. That answer is much too pat and easy and there's no way that such a complex disorder can be shoved into a little pre-packaged answer like that - it's ridiculous. There are undoubtedly many sources of this disorder and many things that can and do bring it on in different people. Of course the mind affects it --- we all know stress and worrying and so on exacerbate it. But being the sole (or even main) cause? Nope, don't buy that for a minute.

And as JayCS says, there's no need for you to present an alternative theory. You are the one suffering from a syndrome, not the one tasked with determining what causes it. I would look for a different doctor if I were you.
Wishing you the very best of luck, and hope we can help you.
 
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