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My mum has cfs and fibromyalgia and for the past few years I've never felt well. Some days are worse than others. My main symptoms are fatigue (not falling asleep kind of fatigue) literally I feel like my body can't carry me,I feel like I'm walking through mud. I walk up the stairs and by the time at the top I need to sit down everything hurts....... I also have vertigo and general off balance sensations,I struggle with ibs and feel like I'm coming down with something all the time I'm always freezing or boiling hot. I also struggle with facial pain and lots of sinus issues and burning joints. Im struggling to get my doctor take it seriously so far I've been told I'm anxious,stressed or unfit. Im not sure if I have fibro? I'm looking to see how other people's symptoms started. Xx

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  • Posted

    I have this , I’ve been diagnosed with fibromyalgia and before i started meds i would describe it as slogging thru pudding . The weakness felt as if i would drop in my spot just walking , and the fatigue , oh the fatigue . Not doing much better now but the pudding feeling better 
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  • Posted

    Mine started with your fatigue symptoms. I also would loose all strength and be unable to walk. In the beginning I simply could not at all scale stairs, I went up and down on my butt, one step at a time. I have always had sinus issues but I dont think I had more in the beginning. I have sinus migraines which are real migraines related to sinus issues. Try Excedrin migraine if it works ask your Dr to try Sumitriptan IF you think its worth it. It has been a godsend for me. The way I understand it is that if a migraine med works on your headaches its a migraine. I personally cannot tell the difference, I believe all my head issues are now sinus migraines. Tummy issues were also not present in the beginning for me but recently been compounded by use of pain meds or dietary issues as I also do not have a gall bladder. I had something which I believe is a rare symptom in the beginning, severe spasms. I actually broke the foot off of a metal wheelchair on a bad night, this was when I could barely stand on my own. Temperature I dont believe is related but could very well be. I was ALWAYS freezing when I became ill and now I get both, heat usually comes if I try to do too much though so this could just be over exertion. IMO... get a new doctor, if you cant tell him flat out you do not think he has your best interest at heart and seems to be refusing to treat you. Fibro now is mostly diagnosed after testing for everything else, that doctor not starting these tests could possibly be hindering your medical health. The sooner you get a diagnosis the sooner you can figure out what works or doesnt. I dont want to be gloomy but nothing has ever worked for me, hardcore pain meds have but Id rather be in pain than a zombie.
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  • Posted

    Hey Leanne,

    Mine definitely started off with fatigue. At the time I had thought that the fatigue was due to how much I work and the migraines (which were my initial symptom) at the time. I always feel sluggish and like my limbs weigh so much and it's hard for me to do much. Like VooDoo I also have severe spasms and my hands are always shaky now. I have had stomach problems since the beginning as well. I will eat the same thing as everyone else and they will feel fine but I almost feel like I have food poisoning. I have become very cold intolerant now and everything hurts more when it's cold, but I also get hot flashes randomly and night sweats now as well.

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  • Posted

    Hello Leanne,

    I'm sorry to hear that you are feeling so unwell.  I'm not able to say that you have FM, but neither can your doctor as he/she is not qualified in this field.  They need to refer you to a Rheumatologist who will do various tests, blood, scans, x-rays etc to rule out anything sinister before supporting a diagnosis of Fibro.  I have a very supportive GP, however if your GP won't refer you, I would seriously consider changing doctors.  Good luck x

     

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  • Posted

    Leanne i totally agree with you hear, it was good nice Rheumatologist who diagnosed me many years ago. My only regret was not keeping a copy of the letter he sent to my family dr all them 23 years ago as now i could do with this when i get that letter to apply for the PIP. 
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  • Posted

    thanks for all your messages its really helpful to hear other peoples experiences, im back with my gp this evening so i will see how far i get this time, its so hard feeling this way but not really having any definative cause of why. I also wonder if its hereditary? anyone have any knowledge of this?

    I honestly have days where i feel so bad that i think there must be something terrible wrong with me! i had a baby 18 months ago and towards the end of my pregnancy i could barely walk and it wasnt to do with pain it was to do with just the physical exhaustion even standing for more than a couple of minutes i couldnt do! Asking other pregnant friends if they had this issue none of them did! the more i think about it the more i think ive lived with this for a long time but just pushed through. Has anything helped anyone? diet changes? lifestyle changes? Weirdly i tend to feel better in the summer months( only slightly) anyone else notice changes through seasons? Anyone else get plapitations with this? ive suffred with them for years and got put on beta blockers to calm them down but they copuldnt find a cause for them xxx

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    • Posted

      Pregnancy with FM is a 50/50 gamble. 50% chance you get worse during, 50% you get better. I got better until the final stages but not a HUGE difference from my non FM pregnancies. Taking care of the baby is the hard part, make sure you have support and the child grows up understand your limitations and not to cross you.
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    • Posted

      the start of my pregnany i was signed off work for 5 weeks for hypremesis and exhaustion but between 16 and 30 weeks i felt amazing all my dizziness went! but after that i felt awful!!! it was really hard as lots of people would coment " your only pregnant not dying" but i felt like i was!

      Yes im feeling it more know i have a little one especially with the lack of sleep and the early mornings!

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