Wondering If I have fibromyalgia

[DaisyBelle]

Wondering If I have fibromyalgia.

So, in 1997 I was diagnosed with CFS. I can remember when I first felt unwell, about a year before diagnosis, when I got up one day & couldn't put any weight on my right leg, this lasted a week. I eventually felt better and carried on as normal.

A few months later the fatigue hit. Muscle & joint pains, unrefreshed sleep, brain fog, TMJ. Light sensitivity, noise sensitivity, sensitivity to chemicals. My fingers and wrists were so painful I had to have them bandaged up. Depression, anxiety, heavy periods, the whole shebang. I was bed ridden for 18 months. Around that time I was diagnosed with hypothyroidism & I can't regulate my temperature.

After a few years I clawed myself back to working full time, which did so much for my self esteem, but I have never known a time in the last 25+ years where I wasn't constantly knackered & I have missed so much through exhaustion, but I just lived with it.

In the last year, I have started going through the menopause & after a bad bout of covid pretty much every muscle & joint in my body hurts. I've got in touch with my Dr, had bloods & am due to go there next week.

So I did the no-no & googled symptoms. I just thought it was not enough HRT tbh. Then I came across fibromyalgia & it's almost like a light bulb switched on. I know - goggling was a terrible idea! However a few things stuck out. Restless legs - I get those badly at night, the rash on the chest...I have been having a strange rash for the last 7 years, itchy arms to the point I lacerate them & headache/migraines.

Now I know you guys aren't doctors, but have any of you been misdiagnosed as CFS before Fibromyalgia?

Also, I'm very interested in hearing about the rash if people get it, cos it's not something I have ever found a proper explanation for why it occurs. It comes up like welts, not necessarily in stressful situations and last for weeks. If any of you get this would you be willing to just discuss it with me please. It's always hugely embarrassed me that I get it and I have never discussed it with my doctor.

Thanks in advance for reading, I'm just a bit taken aback, as I was aware of fibromyalgia, but nowhere near the number of symptoms being similar to mine. I get that CFS/ME & hypothyroidism have overlap. However,
I was shocked when I saw the number of symptoms matching mine. Even more so when I saw the poster who said: I can't read big blocks of texts! I have had when studying to put everything in to smaller sections otherwise I have no chance of reading remembering.

 

[DaisyBelle]

I should just add, that what really is making me go to the doctor was the pain in my lower back, since covid, when I stand or walk for any length of time it feels as if I had been kicked in my lower back. A stabbing pain, which makes me double over. It started with that not long after, now my ankles, knees, wrists & fingers hurt constantly. This is what has made me get in touch with my Dr. I spent so much time at my Dr's in the late 90s, and was so unbeliever at first back then it has made me avoid going since.

 

[sunkacola]

Hi @DaisyBelle , and welcome to the forum.
Yes, many people are misdiagnosed, but what is also true is that ME (or chronic fatigue syndrome) and Fibromyalgia have many things in common, and a great deal of cross-over. They also occur simultaneously in people, making it sometimes a challenge to determine what is dominant.

I always question, however, how important it really is to know which is the main syndrome, or which is more present if both are. Basically, there's no known cure for either one, and treatment is much the same. I have heard some say that with ME the #1 symptom is fatigue, whereas with fibro it is pain, but then again some people say it's not that simple.

With fibromyalgia the most important thing you can do for yourself is twofold. 1) TELL your doctor about the rash, and about everything else that is going on for you. Get tested for everything that could be causing your symptoms.

Things can occur in a person who has fibro that are not related to the fibro, but often those of us with this syndrome tend to automatically think any new thing is caused by the fibromyalgia and therefore do not mention it or try to treat it. But everything needs to be properly investigated in case it is something that is unrelated to fibro and can be successfully treated.

The other thing is, 2) Do your own experimentation into what might be triggers for your pain and what might help. I have written a post on this with suggestions, and I recommend you read it.

While spending time googling symptoms is not always advised, it's not always a bad thing either. The main reason I advise people away from that is that some people go into anxiety or panic mode and start thinking they have all of the worst possibilities after looking up their symptoms. In extreme cases, this can go so far as to actually create those symptoms or conditions (the mind is a powerful thing), and of course this can be very detrimental. At the least, it can cause unnecessary stress, which exacerbates everything. It doesn't sound as if you are going down that anxious road, though, and doing some research in a reasonable frame of mind never hurts.

As for your back, have you tried chiropractic? If you have access to a truly good one, they can possibly address that problem. It might be worthwhile to look into it.

Meanwhile, check out my post and see if you want to try any of those things. And by all means, stick around here if you like. This is a forum full of supportive people. Ask any question you like; this is a safe space. You don't have to face this alone; we are here to help if we can.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[SBee]

Hello DaisyBelle,

Welcome. I am quite new here too,but the help and support I have been shown is amazing.
So whilst I am newly diagnosed I don't feel qualified as such to offer much in the way of practical knowledge- but you already have that in the above reply.

what I can say is that I have some similarities to you ( and am sure other do ) in that I have hypothyroidism for about 25 years, I am going through the madness of perimenopause and was diagnosed wth chronic fatigue syndrome some 30 years ago.an

when I started getting a lot of distressing symptoms I assumed many, including the joint pain in my hands and wrists was due to hormonal upheavel. But increasing my hrt didn't help at all, it was getting worse.

a g p thought my CFS was back and worse, and sent me to an ME \chronic pain clinic who diagnosed not ME but fibromyalgia. ANd after so many tests to eliminate other possible cause I was relieved to get a formal diagnosis.

But I also believe my hand pain is also from a separate issue and my dr is giving further tests for autoimmune arthritis ( I already have osteoarthritis)

so please do follow the advice of those who know so much on this forum to ensure nothing else is going on alongside the possible fibromyalgia.

as I repeat I am no way experienced having such a new diagnosis myself but wanted to assure you others can identify with some of what you are going through, with all the health stuff going on. Take care

 

[DaisyBelle]

Hi @DaisyBelle , and welcome to the forum.
Yes, many people are misdiagnosed, but what is also true is that ME (or chronic fatigue syndrome) and Fibromyalgia have many things in common, and a great deal of cross-over. They also occur simultaneously in people, making it sometimes a challenge to determine what is dominant.

I always question, however, how important it really is to know which is the main syndrome, or which is more present if both are. Basically, there's no known cure for either one, and treatment is much the same. I have heard some say that with ME the #1 symptom is fatigue, whereas with fibro it is pain, but then again some people say it's not that simple.

With fibromyalgia the most important thing you can do for yourself is twofold. 1) TELL your doctor about the rash, and about everything else that is going on for you. Get tested for everything that could be causing your symptoms.

Things can occur in a person who has fibro that are not related to the fibro, but often those of us with this syndrome tend to automatically think any new thing is caused by the fibromyalgia and therefore do not mention it or try to treat it. But everything needs to be properly investigated in case it is something that is unrelated to fibro and can be successfully treated.

The other thing is, 2) Do your own experimentation into what might be triggers for your pain and what might help. I have written a post on this with suggestions, and I recommend you read it.

While spending time googling symptoms is not always advised, it's not always a bad thing either. The main reason I advise people away from that is that some people go into anxiety or panic mode and start thinking they have all of the worst possibilities after looking up their symptoms. In extreme cases, this can go so far as to actually create those symptoms or conditions (the mind is a powerful thing), and of course this can be very detrimental. At the least, it can cause unnecessary stress, which exacerbates everything. It doesn't sound as if you are going down that anxious road, though, and doing some research in a reasonable frame of mind never hurts.

As for your back, have you tried chiropractic? If you have access to a truly good one, they can possibly address that problem. It might be worthwhile to look into it.

Meanwhile, check out my post and see if you want to try any of those things. And by all means, stick around here if you like. This is a forum full of supportive people. Ask any question you like; this is a safe space. You don't have to face this alone; we are here to help if we can.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

Thank you so much for the welcome Sunkacola. I really, really appreciate it.

I agree with what you are saying & sometimes it has been hard to distinguish what the dominant symptom has been. I think over the years I've kind of got used to having the fatigue, that it's been so constant it's almost like I don't know any different now. I would say of late, the pain is more dominant, in that it really does affect what I want to do, especially my back & walking. I'd always had "weak" spots with CFS, like my knees, wrists & throat, but these last weeks the pain has been something else.

Re: the googling, I'm pretty level headed, in that I don't look and immediately think I'm at deaths door. It was just like a few odd symptoms adding up, such as the chest rash, the restless legs. Things I couldn't put down to CFS, and had never really had an idea why I get them.

Out of interest, do fibromyalgia suffers have issues with histamine intolerance at all?

I haven't tried a Chiropractor yet, but I have definitely been wanting to try one. I was actually going to phone tomorrow before you said that!

I shall read your post & stick around. Thanks again for the welcome.

 

[DaisyBelle]

Hello DaisyBelle,

Welcome. I am quite new here too,but the help and support I have been shown is amazing.
So whilst I am newly diagnosed I don't feel qualified as such to offer much in the way of practical knowledge- but you already have that in the above reply.

what I can say is that I have some similarities to you ( and am sure other do ) in that I have hypothyroidism for about 25 years, I am going through the madness of perimenopause and was diagnosed wth chronic fatigue syndrome some 30 years ago.an

when I started getting a lot of distressing symptoms I assumed many, including the joint pain in my hands and wrists was due to hormonal upheavel. But increasing my hrt didn't help at all, it was getting worse.

a g p thought my CFS was back and worse, and sent me to an ME \chronic pain clinic who diagnosed not ME but fibromyalgia. ANd after so many tests to eliminate other possible cause I was relieved to get a formal diagnosis.

But I also believe my hand pain is also from a separate issue and my dr is giving further tests for autoimmune arthritis ( I already have osteoarthritis)

so please do follow the advice of those who know so much on this forum to ensure nothing else is going on alongside the possible fibromyalgia.

as I repeat I am no way experienced having such a new diagnosis myself but wanted to assure you others can identify with some of what you are going through, with all the health stuff going on. Take care

Hi SBee,

Thank you for your welcome & reply. We do indeed have some similarities.
And thank you, it's nice to know that I'm not thinking totally left field here.

I found extra patches that I had & put an extra dose on, (only small) I did it because the wait to see the Dr is so long where I am & short of having lots of OTC painkillers all day long to just function & be able to get through my days work which irritate my stomach, i got a bit desperate. But if anything, the pain is worse and it's effecting more joints.

I will be sure to follow members advice. I haven't been part of CFS/ME communities for many, many years & this is the first time in years I have really discussed my health in any way. It was just a bit of a shock seeing symptoms I have had & not known why being linked to an condition so similar to what I have been diagnosed in.

I'm so sorry you have had it rough, I feel for you. I just had to fight so hard back then to even get a diagnosis, or even be believed. I don't know if you had that back then too.

I really, really appreciate you coming back to me.

 

[sunkacola]

Out of interest, do fibromyalgia suffers have issues with histamine intolerance at all?

This is not something that is common in people with fibromyalgia, nor is it listed as one of the signs or symptoms. But people with fibro often have other things going on simultaneously, especially in the areas of intolerance: gluten, chemicals, histamines, lactose, and so on.

 

[DaisyBelle]

This is not something that is common in people with fibromyalgia, nor is it listed as one of the signs or symptoms. But people with fibro often have other things going on simultaneously, especially in the areas of intolerance: gluten, chemicals, histamines, lactose, and so on.

Thank you.
Can definitely relate to the gluten, lactose, chemical intolerance.
Seeming out of nowhere the histamine intolerance kicked in. Especially if stung, that usually results in a week of swelling & uncomfortableness.

I just thought I'd ask as it was yet another of those strange responses that seemingly came out of nowhere.

 

[sunkacola]

came out of nowhere.

Well, this is just a thought I have had, and has no basis that I am aware of in scientific fact. But I have wondered about these things. Naturally nothing genuinely comes out of nowhere, but we don't know why or from where something came, and if it is sudden then it feels surreal, or out of nowhere.

I think that fibromyalgia and ME are both situations in which, for reasons that are yet to be discovered, our physical/mental systems go haywire in certain ways. We already know that the pain we feel is not resultant from injury or detectable pathologies, but it's real nevertheless. Which indicates that something has gone amiss in the system that sends pain signals to the brain....or else the brain has gone amiss in its interpretation of those signals. Or both.

I know, for me, it has been strange because I always have had an extremely high tolerance for pain. I still do, in some ways, but there are weird ways now in which that has utterly changed. For instance, on occasion I will just barely bump something with part of my body (my back is especially susceptible to this), and the pain I feel will be shocking in its intensity. There won't be the slightest bruise, and I know I barely bumped it, but the pain is immense. Other days, I can bash something hard (even my back) and hardly feel it, and finding a big bruise there later surprises me, which is how I have always been in the past. This is entirely unpredictable.

The thing is, our body/mind is all one thing. You can't affect one part of it without affecting the whole thing. And if a whole lot of the body's energy/defense system/etc has to go to dealing with one thing, other things will start to suffer or go haywire as well. Overcompensation, over stress, and so on. Just as with the spine, if one little thing goes out of alignment and is not corrected it will over time affect the entire spine, which in turn affects the nervous system, which in turn affects.....and so on.

So, nothing really comes out of nowhere but it sure feels like that at times. Some days I feel like saying "What? NOW what's going on?" when something unexpected or new crops up. I try to have a sense of humor about it. Easier some days than others.

 

[JayCS]

Hi DaisyBells, and welcome from me too!

Now I know you guys aren't doctors, but have any of you been misdiagnosed as CFS before Fibromyalgia?

Wouldn't call it "mis"-diagnosis, from most and from what you describe. Just the overlap makes it hard to distinguish.

Me: I got FM diagnosed 2020. But since getting all my pains down and my exhaustibility rocketing, that does suggest ME/CFS. But quite a few of those symptoms don't quite fit. Looking at treatments for ME/CFS broadens my toolbox, most importantly.

• Light sensitivity, noise sensitivity, sensitivity to chemical
• rash on the chest...I have been having a strange rash for the last 7 years, itchy arms to the point I lacerate them & headache/migraines. It comes up like welts, not necessarily in stressful situations and last for weeks.
• the pain in my lower back, since covid
• Out of interest, do fibromyalgia suffers have issues with histamine intolerance at all?
• gluten, lactose, chemical intolerance.
• out of nowhere the histamine intolerance kicked in. Especially if stung, that usually results in a week of swelling & uncomfortableness.

This combination suggests MCAS might be likely, mast cell activation syndrome, an immune system condition.
MCAS-experts consider fibro symptoms to be a possible part of it, at least it's an increasing co-morbidity.
The "histamine intolerance" there wouldn't be the same as normal histamine intolerance, loads of foods to watch out for.
The SIGHI list is (one of) the most reputable to find them, cos it's carefully done, all-encompassing and differentiated well.

Me: My "histamine intolerance" started from the Covid-jabs (and the exhaustibility rose from 70% to 90%). However I've had lifelong intolerant skin and gut, so we think it was the last straw for MCAS. That diagnosis helps me more than "the post vac syndrome form of Long Covid", cos MCAS is a bit more "established". But both help. I was pointed to MCAS and prevention of vaccine problems by experts quoted on healthrising's vaccine experience poll, e.g. Nancy Klimas. Sometimes an antihistamine helped, but it itself caused headache/migraines, stopping it stopped them. Next to 30 supps etc. now LDN is my main help. I only tried it when I realized it's being recommended more and more for all these conditions.

My stings have become extremely difficult too, starting tiny, growing enormous. If I have 2 or more, the histamine takes over my body, not just burning tongue or a nauseous sinus headache. Diligent prevention turned out better, but cold showers helped me get more sleep again, calm things down, and increasing GABA, for serotonin, to decrease histamine.

So you: If the lower back pain was "since Covid" - is praps the "histamine intolerance" also since then, sorta Long Covid?

in touch with my Dr. I spent so much time at my Dr's in the late 90s, and was so unbeliever at first back then it has made me avoid going since.

And you don't want to switch?

 

[SBee]

Hello @DaisyBelle
Just a quick I put from me, seeing as you are (peri?) Menopausal, I have known some women in meno seem to have histamine difficulties, not something I can identify with hormonal speaking. Saying that I have always had what I thought of as sensitive skin. Can't wear wool, careful with detergents and am extremely susceptible to insect bits that come up in huge welts. If me and my husband are side by side, they won't go near him but devour me! Grr.

so it may be worth you researching histamine and menopause??

i can however relate to the ' not being believed ' as I am sure so many on here know about. When I was diagnose CFS some 30 years ago I was basically given no help or guidance whatsoever. I was moved to years when few months ago a dr told me this was actually in my medical notes. For 30 years I though ' it was all in my mind ' it 100% was NOT.

but as above replies show there are similarities and crossovers.

what I would advise, as you are having problems with a dr, and this is my long experience coping with perimenopause, is when you are having any appointment, prepare well
.My foggy mind, and anxiety could let me down, I felt not mentally strong, and so became a bit of a mess. I learned it was better to write notes prior to a face to face or phone appt, or if so had the choice, write an concise email to my dr so I could take time and write all relevant details and questions down.

coping with menopause, fibromyalgia and other health problems is hard. Can't figure out what symptom comes from where. But Take your time, maybe ask to see a dr interested in menopause at your surgery if you feel you need extra help there. If one condition gets a bit better controlled, I found it then easier to ' move on to ' the symptoms that menopause excluded. That's what helped me asap am someone who likes to section things off into more manageable bites.