Fibromyalgia?

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It all started about 2 months ago, I started getting a weird headache that radiated down my neck. It lasted about a week then went away. Now its back and my head, neck, shoulders, back and arms ache like i have the flu but i don't. It's been over a week this time, and my feet have been burning and I've also had strange crawling sensations on my back. My pain won't ease up and im worried... what if it's something bad? Im also extemely fatigued always and have stomache issues. What were some of your fibromyalgia symptoms? Could it be something else? Thank you for reading.

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  • Posted

    Hi.

    Sorry to hear you're having to deal with all those symptoms, it's no fun to have a whole host of symptoms, and it can make you think something bad is going on.

    I've been diagnosed with Fibromyalgia, CFS/ME, Anxiety and IBS (currently under investigation for possible IBD) and for me I have loads of symptoms, not all at the same time luckily but usually a combination of some at once. I can get headaches, dizziness, faint feeling, sensitivities to light and temperature, flushed hot face, neck, shoulder and back pain, chest pain, breathing difficulties, random abdominal pain, bloating, nausea, bowel churning and gurgling, diarrhoea or constipation, hip and knee pain and restless, achy, itchy, painful legs (pretty sure I've missed some).

    This all came about after numerous tests and investigations into my symptoms revealed nothing out of place. Yes, I still have to have a small bowel MRI scan to check for Crohn's Disease, however this is unlikely as I don't share the common symptoms of Crohn's, and my last colonoscopy with biopsies a few months ago came back as no problems found, apparently I have a very healthy looking colon, therefore Ulcerative Colitis was ruled out. I was also told my terminal ileum, last part of small bowel, looked good and this is a common area to find signs of Crohn's.

    I don't get all my symptoms at once, but I generally have a combination of a few at any one time.

    I hope that info helps, the only way to be sure is to get some investigations under way, if you haven't already, it's the only way to be sure.

    All the best for the future.

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    • Posted

      Thanks so much Paul. Wow sounds like you've had quite a journey with trying to figure all of this out. I've had stomach issues as well for a good while before all of this started. I have constant burning in my stomach and have had to be on omeprazole 40 mg a day just to function and eat. I was scheduled for an endoscopy last year to figure out what was going on but ended up getting pregnant and it was all put on hold. I had my son 3 months ago and now all of these other symptoms have come along. At first I was wondering if it could possibly be a vitamin deficiency or something similar. I guess I'm just more worried about something crazy like cancer that's spread everywhere rolleyes Thank you so much for sharing your symptoms, I hope you're feeling well.

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    • Posted

      It's been 3 years of investigations to get to this point, it's been a long old slog, and still I feel lost. Yes my thyroid function was tested, as well as tested for autoimmune disorders and again nothing wrong there. Like you I'm on 40mg of Omeprazole, as well as 135mg of Mebeverine 3 times a day to try and keep my digestive system under control. I also feared the worse when all my symptoms started, it's only now after having ultrasound and MRI scans, X-Rays, colonoscopies, endoscopies, countless blood, urine and stool tests, that I'm almost sure my diagnosis is correct, unfortunately my anxiety doesn't let me believe that totally, and even now there is that little voice in the back of my mind telling me 'what ifs' and 'could be's'.

      It is a long old process getting a diagnosis of Fibromyalgia, but if you are worried about your digestive system, check your bowel movements. Not a nice thing to do but they can tell a lot about our digestive state and health. For me my digestive health creates the worst symptoms for me, I look pregnant most days due to extreme bloating, but Fibromyalgia and digestive disorders go hand in hand, so I shouldn't be surprised really.

      All the best, try not to worry too much and do keep in touch and let us know how you get on.

      Good luck for the future.

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    • Posted

      Thank you, I will let you know what I find out. I have a doc appt for next Thursday and I will tell her everything. I went to the er last night cause I literally felt like I was going to have a seizure, and they basically turned me away and said it wasn't an emergency and they couldn't help me. Wouldn't even do blood work or anything.. I couldn't believe that. I mean I get they only treat emergencies, but what if I keel over and die at home lol. Sorry to ramble, I just feel like crap and I'm scared. I'm glad though that at least the major stuff was ruled out for you and it's not one of those horrible diseases. I know it's hard with fibromyalgia and all of the symptoms that come along with it, but at least it's nothing life threatening for you. I hope you continue to get better and hopefully feel well more than badly.

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    • Posted

      I'm also bloated all the time. The only time I'm not is if I barely eat or really try to cut out all the bad foods, but then eating again or eating the wrong thing will cause me to bloat up almost right away. I have a constant burning in my stomach on the left side and omeprazole is the only thing that helps it. If I don't take it or miss a dose, the burning comes back along with violent diarrhea. I have no clue what's wrong there, I'm guessing inflammation and who knows what else. I do know that when all of these fibro like symptoms started that my stomach issues got a whole lot worse. I feel like a mess and I just want to feel normal again or at least close to it. I'm 30 so relatively young, but I also know that as we age things begin to go wrong. So who knows sad

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    • Posted

      Good luck with your doctors appointment, I do hope it goes the way you want it to, at the least I would expect some investigations to get under way for you. Really bad that ER wouldn’t at least do the bare minimum for you, for all you know it could well have been something serious. I’ve had feelings like I’m going to have a seizure as well, I get them now and again and they are very scary.

      I know and understand your fears, I’ve been there to, and had those same fears today. I don’t know what happened earlier, but I only reached out with my left hand to pick something up, and I immediately got a very sharp pain around the left area of my back, just below my shoulders and underneath my ribs. Since then I’ve had a dull band of pain going right across my back, level with top of my stomach, that hurts more when I move. Also the top of my stomach feels very sore inside, and my whole abdomen feels bloated and rock hard to touch, I’ve also been burping a lot more than usual. It’s very odd that it came on so suddenly after the sharp back pain, it feels like I’ve caused some internal damage somewhere. I haven’t had a flare up like this for quite some time, long enough that I cant actually remember if I’ve had pain this bad before. No point going to the doctor, it’ll only get blamed on my Fibromyalgia, CFS, IBS and/or my Anxiety. Fingers crossed it eases by the morning, I don’t fancy another day like this.

      I hope you are feeling better, and I do hope you get some positive actions when you visit your doctor.

      Take care and all the best.

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    • Posted

      Thank you I hope so too. I'm sorry to hear about pain as well. I've heard from others that they sometimes can get a sharp stabbing pain randomly that can feel like knives. Maybe it's something like that. I had one in my knee yesterday along with weird twitches everywhere. I was going to ask you if your pain is in your joints/bones or in your muscles. The reason being is that my pain literally feels like it's in my joints, as in neck, back, shoulders, elbows, wrists and fingers. It throbs and aches most the time. I read that fibro main is usually a muscle thing but I don't know if it's entirely true. It sort of makes me question whether it can also either be rheumatoid arthritis or even lupus. Maybe even a vitamin deficiency?

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    • Posted

      I get mostly pain in my joints, particularly the areas you mentioned as well, and my muscles generally ache and feel heavy and weak. My neck, back and shoulders are particular problem areas for me, as well as hips and knees.

      I actually have to take supplements, mainly Vitamin D, as I have also developed lots of food intolerances, so my diet is quite strict and lacking variety, plus I’m pretty much housebound, hence why my Vitamin D levels are usually low.

      I don’t think these pains I’m going through at the moment are Fibro pains, I’ve got a feeling I’ve done some damage inside, probably from being so bloated that my stomach has pushed against other organs in my body, which in turn pushes them against my bones. I have just woken up and I know already it’s not going to be a good day today, acidic taste in the back of my throat, stomach and bowels churning and gurgling away, weird boaty feeling throughout my body, what joy!

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  • Posted

    Hi.

    ?I'm still wondering whether I have fibro myself. I've been through the mill and also suffer bouts of extreme anxiety at times (but if I didn't feel how I do then I don't think i'd worry as much).

    ?All started nearly 12 months ago as a sharp stabbing pain in my stomach. Noticed my tongue go white, my skin bruising easily, bad headaches, aching muscles and joints, restless leg syndrome, slow skin healing, some tooth decay, blisters on inner lips, spotty back, very dry skin, body hair loss, prolonged stomach problems, painful lymph nodes (not swollen),  alcohol intolerance, very fatigued, breaking nails ETC!

    ?I still have these problems.

    ? 6 months or less ago I literally thought I was dying. Seriously. Didn't feel like I was been taken seriously by the doc either.

    ?I've been tested for STDs/STIs, thyroid, autoimmune diseases, diabetes, immunology bloods, food intolerances, urine/stool samples, Hepatitis, cell counts, THE WORKS!! All clear. I did have VERY low folic acid at one point but that's now back to normal.

    ?My question is, with all my bloods and samples been fine, diseases being ruled out, could I have Fibromyalgia or am I just going mad? Don't know how much more I can handle with what seems to be a new ailment every week and doctors telling me 'you're healthy'. (Sure they fob me off thinking i'm just anxious, but I know its more than that)

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    • Posted

      Hi Gaz

      Sorry to hear about your history of problems, reading it made me relate to you so much, particularly the bit where you were told you are the picture of health, but you know otherwise, and then having anxiousness thrown in there for good measure.

      In answer to your question then yes I think it’s very feasible that you could be suffering with fibromyalgia. We don’t make our symptoms up, they are there and we are constantly reminded of it, and I find it very patronising when we are told our anxieties aren’t helping. We wouldn’t be anxious if we knew the reason for our symptoms, as we’d know what was causing them. There always seems to be a new feeling, pain or physical ailment everyday. I will say that I’m sure my anxieties make the symptoms worse, but I know they would be there regardless if I was anxious or not.

      I do hope you get some answers soon, but even though you won’t want to hear this, be prepared to be stuck with your symptoms for some time. You might be lucky and get the answers you want, but considering the amount of testing you’ve been through, you’re probably thinking yourself that nothing will likely be found.

      I do wish you all the best for the future, and I hope you can get some relief from your symptoms.

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    • Posted

      It must be so frustrating to hear everything is fine while you're feeling all of these horrible symptoms. Like I told Paul, I'm glad at least that they were able to rule out all of the major things it could be and put your mind at ease about those things. From everything I've heard it definitely sounds like fibro when everything else has been ruled out and you continue to have those pains. Our bodies are so strange, and it can be scary trying to live a happy normal life hut be in pain and fear the worst. I hope they get to the bottom of what's wrong for all of us so we don't have to wonder anymore.

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  • Posted

    Hi both.

    ?Reading both of your stories makes me feel a little better knowing that I'm alone with this. I JUST WANT A DIAGNOSIS and maybe things will settle down. Its the not knowing that makes symptoms so much worse...i'm sure of it. Because as you say Paul, throw anxiety into the mix and you become certain that you're soon to meet your maker. Can I ask if any of you guys have suffered with rashes/spots; slow wound healing/easy scarring or white tongue? Its these things that worry me the most. My skin cuts so easily now. And I can literally grab hair from my chest with no pulling pressure at all. Was petrified of HIV (after my friend discovered she contracted it) and this sent my anxiety through the rough. (Nothing sexual apart from kissing).  Physical symptoms of anxiety were horrendous. This is around the time when all these symptoms started thrashing me. So I had the test. Negative. Then 6 weeks ago another doctor wanted an immunology blood test. I assume clear again as I've heard nothing and my docs always call if something is wrong. Fibro I hear is really hard to diagnose as it has very similar symptoms to many diseases, yet with anxiety and possible fibro I think the worse (despite clean bloods).

    ?If I knew that fibro caused these conditions I'm worried of then I'd feel calmer. What I'm saying here also Wynter is don't be scared. Your anxiety makes symptoms so much worse. Mentally and physically.

    ?My knee joints play me up most, and thigh muscles, my neck, shoulders and back are a close second. But when my IBS randomly kicks in then my whole body is totally drained. Literally a walking, aching zombie who just wants to rest and sleep.

    ?As for crawling sensations, tick. Feels to me like water been trickled over my skin that I go to wipe off, only to find nothing there. I'm pretty certain your major issue is more so anxiety related because every single symptom you've mentioned I've had.....and more.

    ?I'm pretty sure that my anxiety may also be a factor, but as Paul said we don't make these symptoms up, and if we knew what it was we wouldn't be anxious. But the symptoms are through anxiety.

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    • Posted

      Hi Gaz

      No you are definitely not alone, and it can be a welcome relief to talk to people who are in the same boat as yourself. I wouldn't say our symptoms are through anxiety, I think they cause anxiety and can make symptoms worse, as well as bring on it's own set of symptoms.

      My doctor once told me that I need to try and calm down as my fears and anxiety would be making me worse. Easy for him to say I thought, however he explained why and his logic was quite an eye opener. He explained that when ever we get stressed, worried, scared, anxious or any of those feelings our body automatically goes into a 'fight or flight' situation, and will instinctively produce adrenaline. That wouldn't be so bad if we were prepared to use this adrenaline with the correct response, either fight or flight. However, and I'm talking about myself here, all I do in these moments is just sit there and worry more, which in turn produces more adrenaline. Too much adrenaline will cause heart palpitations, dizziness, sweating, nausea, and also force parts of our bodies to act abnormally, including the digestive system. Adrenaline is supposed to trigger our brains into sending as much oxygenated red blood cells to our main movement muscles, to aid them to perform stronger and faster, if this doesn't happen, we have unused adrenaline going around our bodies which as I said causes other body organs to function abnormally. I thought that was rather interesting, and quite viable. How to calm myself down though is another matter, the only way I have managed it now is after 3+ years of going through all of this, with all the tests and investigations done, and the fact that I've never been unwell enough to be admitted to hospital, then there can't be anything life threatening going on or else I would have known about it though. However, I do still have the 'what ifs' and 'could be' going on in my head, and still wonder if something has been missed. It's like the last three days, I've been feeling really ill after leaning over to pick something up and then getting a sudden sharp pain in my left, back, rib area. This then went to an intense dull, achy band of pain right across the top of my stomach and below my chest, radiating through to my back, which hurts more with movement. On top of that my stomach and bowels have been churning and gurgling like mad and I get sharp, getting loads of bloating and stabbing pains in the centre of my chest. I'm pretty sure it's all digestive problem related, but there is always that worry that my heart is just going to pack up or something. Still enough of my waffling, let's see if I can help with your queries Gaz.

      I get loads of spots and I have had rashes before too, and I have noticed I seem to take longer than normal to heal if I get a cut or graze, although I don't get a white tongue, but don't forget, if you do have Fibromyalgia, your symptoms could be totally different to another Fibro sufferers symptoms. One symptom I have when I'm in a flare up period is that my left eye twitches and feel lumpy, only my left eye though, my right one is fine, that's my warning sign.

      One thing I wanted to ask yourself and Wynter, have either of you had your stools tested? If you are getting IBS type symptoms, then I believe you should have your stools tested, and the tests they usually do, and you should request for if they haven't, are faecal elastase, faecal calprotectin and blood. Elastase checks pancreas function, calprotectin looks for inflammation (possibly Crohn's / Colitis) and blood will be looking for signs of inflammation or possibly tumors. Even though blood tests can be a good early indicator, they might not pick up the beginnings of certain ailments. I am awaiting a small bowel MRI scan due to having raised faecal calprotectin results on two separate occasions. I had a colonoscopy with biopsies about 5 months ago and that came back fine, the surgeon actually said my rectum, colon and terminal ileum looked very healthy, and as biopsies were clear, we knew I didn't have Ulcerative Colitis, and as my terminal ileum looked good, which is the last part of small intestines / bowel, then Crohn's Disease was unlikely, but an MRI was needed just to be sure. It might be worth seeing if you both can get your stools tested, if you haven't already.

      I think I've gone on long enough now, all I will say is be prepared for many more tests and investigations before a diagnosis of Fibromyalgia will be given, it took me 3 years to get diagnosed and even now I'm still having ongoing tests and investigations. In the meantime do take care, and if there is anything you want to know don't hesitate to ask.

      Wishing you all the best for the future.

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