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hugh07153 hugh07153

do i have fibromyalgia syndrome

Hi there ive just signed up to this forum in desperate need of advice and help. Im 26 and 18 months ago was fully fit played regular sport and very active. Since then things have completely changed to the point where im struggling with day to day life and holding down a 41 hour a week job.

I will list my symtoms below please help me as im at the end of my teather now.

Waking up with no energy what so ever, achy muscles and joints all over  for  the whole day,

Severe lower back pain that never goes away,

Stiffness in neck with movement problems,

Easily fatigued and get headaches and dizziness after exercise,

Shortness of breath,

Constant throat mucus mainly in the mornings,

Most recently severe bowel issues losing a lot of blood on the toilet. (Up to half a pint).

Digestion issues,

Stress and mood problems,

Unbearable headaches,

Sleep problems,

Needing to go to the toilet to urinate excessively,

Numbness and tingling in bottom of legs and feet.

My main issues now are the lower back pains and all over muscle and joint pains with a constant lack of energy. These issues seem to have got alot worse over the last 12 months with my day to day life becoming almost unbearable. Its strange because ive always been soo fit and healthy but now even getting up for work is a challenge and i can hardly move because of the aches and pains but two years ago i could wake up at 6am and go for a jog. My life has had a dramatic change and friends and family have noticed the change aswell.

Any personal experience or medical advice would be a great help thanks

 

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  • emma99427 hugh07153

    Hi. I was diagnosed with Fibro nwarky a year ago. Its difficult as so many of us can have such different symptoms and they vary a lot. I personally have quite a few that match yours.  Have you seen a GP at all? The most wording I find of your symptoms is the loosing blood with bowel motions. That is something I think you should definitely be getting checked. I was diagnosed with CFS in 2008 but still had to go through atonnd of blood tests etc before my fibro was diagnosed.  If you havent alreasy I would make an app with your GP, make a note of all your symptoms and go have a chat x

    • hugh07153 emma99427

      Hi thankyou for your reply. Ive been to my gp a few times now and he did blood tests for diabetes etc, then he said i had depression because i said the symptoms got me down abit, then said it could be a lack of sugar in my diet. I even saw him google my symptoms which really worried me. I got taken into hospital 3 nights ago thats when i lost the blood and they did blood tests and checked for piles etc but all clear. the want to check my small intestines and stomach with a camera next, but seemed to ignore me when i mentioned my other symptoms. Thats why i have joined this site. can i ask how you approached your doctor about this and what you think i could do? also what similar symptoms do you have? thanks 

    • emma99427 hugh07153

      Hi again, sorry just seen your reply. 

      I went to see my GP after my pain levels became unmanageable.  I was used to the fatigue from my CFS but id not had the pain as bad before. Im incredibly lucky that I jave 2 gps I can see that are very clued up on Fibro. The first time I went I was sent for bloods to rule oug anything else. After they came back clear I was referred to the rheumatologist at the hodpital who went over A LOT of questions folowed by the pressure point test to which I had 16 of the 18 painful points. Is that something you have looked into before?

      I also suffer with neck pain, headaches, sorethroat etc but get a lot of pain not only deep in my muscles but in my hips and lower back. I rarely sleep whuch is made worse by the cfs on top and I struggle to do any form of excercise including walking rolleyes

      I try not to get down as I have 3 young children and I hate them seeing me constantly poorly, its so frustrating! 

      Is tgere another gp you can see? As liks you say them having to look it up doesnt seem helpful. Maybe try bringing up Fibro yourself if you havent already. Some unfortunately need a nudge to even consider looking into it.x

    • emma99427 hugh07153

      Forgot to say i was diagnosed with cfs when I was 28 and fibro last year at 33. I also have a friend who has it and shes 26 too. Its affecting a lot more younger people now x 

    • hugh07153 emma99427

      Hey,

      thanks for your reply, ive not mentioned it to my doctor because i didnt want to push the diagnosis on him but i can see what your saying if i dont it might not get sorted. Its crazy because at 18 i played semi pro football and at 21 did amateur boxing so to be soo helpless now really is abit depressing you know. I have two boys myself and i love taking then to the park but now when i do im in agony for days after its crazy. My neck and back pains are constant sometimes i cant even pick things up off the floor. oh your friend has it so theres alot of young people that have it then? im totally new to this whole thing and know nothing about it what so ever. i might look into that 18 point thing. ive had blood tests but thats it soo far. do you not find it hard having fm with the kids aswell? have your symptoms got worse over time? 

    • emma99427 hugh07153

      I would definitely keep seeing your doctor. The other replies are giving some good advise too, thete are other things that could quite possibly be causing your symptoms but either way you need to get to the bottom of it so you can start to manage it. 

      Personally I do find ot very difficult, my hubby has to do a lot to help most days which I hate as ive always been a believer in 50/50 in a marriage but I just cant do much to help right now rolleyes it sucks. Ive got worse over the last 6months but ive gained quite a bit of weight due to comfort eating and  not being active so I know thats making things worse.

      Ive mever been particularly sporty but miss just being able to walk without been layed up for days after so it must be awful to go from being so active to where you are now.

      I feel like im comming across negative, I dont mean to I just understand your frustration and litterally your pain xx

    • hugh07153 emma99427

      wow sounds like everyone gets worse from what ive read. At least it sounds like you have a helpful husband who understands what your going through. Because ive only just started talking about my symptoms my partner is still trying to understand the whole thing i think. I sometimes think she just thinks im getting lazy because ive never moaned in the 7 years weve been together about anything and now im slowly starting to not want to do anything because i physically cant get the energy to do things. over the last few months ive cancelled zoo trips, swimming, all types of days out with the kids because i literally couldnt do anything on those days. can i ask how you explained your symptoms to your partner and how you deal with your bad days? cheers

    • emma99427 hugh07153

      When I was first diagnosed with cfs I tried to hide it a lot, which is difficult when youre falling asleep all the time, but he was extremely supportive from day 1. Since thw Fibro kicked off I feel like im moaning all the time but he has never once made mw feel unsupported.  Im very very lucky in that sense. I find it quite difficult trying go explain my symptoms to anyone else as sometimes you can just see them thinking its in your head which is frustrating.  I know my hubby did a lot of reseaech and he even joimed the UK fibromyalgia website so he could understand as much as possible.

      I deal with bad days by concentrating on the next day if that makes sense. I tell myself thats its a bad day but I always get through it smile I take gabapentin which is the 3rd lot of pills I tried and it helps a little. I just try to stay as positive as I can. My girls keep me goinf to, I want to improve for them smile 

    • fibrogirlinmain emma99427

      Gabapentin is what I am taking also. I know it works some because for reasons I won't get into, I have been off it for a week once and oh my god i just wanted to die. But it only seem to work okay as long as I don't do much. Cleaning the bathroon can put me down for the rest of the day. I want to try the one that was made for fibro, Lyrica I think it is but my dr won't let me because it can mess with diabetes2 and can cause depression which I keep telling my dr the only thing that is depressing me is this 24/7 pain and tiredness. Grrrrrrr

  • David 59 hugh07153

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  • deirdre. 03652 hugh07153

    HI Hugh, my name is Deirdre, I have been diagnosed with fibromyalgia. Have you seen a doctor, I think it is imperative that you do, you are very young to have fibromyalgia and you could have ME.  No matter what, you really need to be seen and examined by a specialist to be diagnosed properly. Anything that is affecting your life so much will wear you down both physically and emotionally, you must insist on your symptoms being taken seriously and if possible start some treatments, there has to be a reason why you have changed from being a fit healthy young man to feeling lifeless. I wish you  all the very best, be kind to yourself. X

  • JerseyKaz hugh07153

    HI Hugh, I have fibro and cfs and some of teh symptoms you mentioned. You seem to have an aweful lot going on and it may all or not all be related.

    The first thing is the blood loss..if you have been losing blood for a while this can cause deficiencies of iron etc which can give a lot of other symptoms like the breathlessness, headaches, fatigue etc etc.

    Sometimes doctors will say your bloods are normal and the ones they have done will be...but they may not have been testing for everything...eg a test for diabetes or routine blood screening will not usually include thyroid unless specifically asked for.

    I used to be fit playing racketball twice a week but then this fibro kicked in and now I'm chuffed just to walk for 15 minutes in one go!

    It sounds possible you may have a stomach issue which has lead on to these other symptoms over time. I would advise going back to your GP for more tests...quite often, cfs/fibro sufferers have low magnesium which can cause some of your symptoms. Also iron deficiency, usually simple to fix can cause many of the symtoms you listed.

    The bottom line is more tests I'm afraid and dont be afraid to keep pushing them for answers!  It took me 4 years to get a diagnosis!

    Good Luck! smilecheesygrinJK

    • hugh07153 JerseyKaz

      Hi there, thanks for the info that really helped. can i ask what cfs is and the difference between that and fibro? might sound like a silly question but i literally know next to nothing about these things i just know what my symptoms are and thats it. 4 years wow thats a long time to be diagnosed, id say my back pain the the worst sometimes i cant even lift things up. what would your advice be on approaching my doctor? also are you in the uk because it might be different in different countrys? kind regards

    • janet01833 hugh07153

      Hi Hugh, let your doctor know that you have widespread pain for longer than 3 months, including fatigue that is affecting your daily life. Even tho I had pain but didnt have swelling in my joints she still referred me to a Ruematologist. That was the person in my case who did all of the blood tests (They do much more blood tests than a regular general practioner) and ruled out any other cause. I am in the US so it might be different there. The blood in stool isnt something Ive seen with fibro though so you might have a few things going on. I really hope you get the help you need! 

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