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Is it m e can anyone help

Posted , 5 users are following.

russ151
russ151

Hi I have been suffering with what started some 2 years ago I was diagnosed with enlarged inferior turbinates I found this out about 6 months ago,I accepted this took some nasal sprays never much helped I found as time went on I would become very tired for periods of the day and had something similar to a migraine feeling would occur I carried on thinking this was down to the nasal problem I enjoyed weight training albeit  it found it harder than ever and work became harder especially my morning shift as when my sleep was ok but I noticed changes eyes where red felt little unrefreshed I would have a lot of viral infections about 3 months ago now I had the worst infection i had ever had and have not recovered it started after the infection i struggled with sleep hardly slept at all had pressure violently awaking me in head recently was told by a neurologist after having MRI on brain was clear and diagnosed severe migraines the thing is I have ibs irritable bladder joint pains muscle aches I have no longer a tolerance to alcohol I have lost my job to exhaustion  I have noticed that this isn't just migraines I go for a walk after when I come back I am so drained I tryed to go back to gym lasted 5 mins anything I do I just feel mentally and physically drained battling with doctors they say it's anxiety my friends think I am lazy I really feel helpless to all this I know my body something has changed I started to wonder if this was it I have blacked out a few times and have seizures arms jerking could this be m e cfs I am getting no help from anyone ??

1 like, 12 replies

12 Replies

  • ann11007
    ann11007 russ151

    Posted

    Hi Russ,

    Getting a referral, diagnosis and the right right support can be a very daunting experience and hit and miss too. It is worth trying out different alternative treatments first to see if anything go possibly help. I hope it isn't me/cfs but first port of call would be to try and find an understanding practitioner. 

  • Lizzlizz
    Lizzlizz russ151

    Posted

    Did you have a rash at the start when all this began? Seizures, jerking, fatigue, intolerance to alcohol, joint pains and muscle aches even the ibs and irritable bladder can be symptoms of Lyme disease. Maybe something worth checking out. Blacking out is not normal or the seizures and should be checked out properly! Testing is not all that reliable thou, maybe post this underthe lyme forum too.
    • russ151
      russ151 Lizzlizz

      Posted

      Well I have had one on my leg but that has gone now bit of a rash on both of my feet bit of redness doesn't bother me I will check that out thanks
    • Lizzlizz
      Lizzlizz russ151

      Posted

      Please do especially if the rash was like a target bullseye! That is the hallmark of lyme.
    • russ151
      russ151 Lizzlizz

      Posted

      No the rash was nothing like that thanks for your concern tho is there anything else this could be that blood tests don't pick up?i can't see all this being related to migraines surely although he did say mine sounded like hemplegic migraine they have been bad but not had any for a while now just left with all these other symptoms and still no refreshment in any sleep
  • jackie00198
    jackie00198 russ151

    Posted

    Well, not the answer you want to hear, but this sure sounds a lot like ME/CFS. If all bloodwork and other tests come back negative, you may want to see an infectious disease doctor who specializes in this illness. Your exhaustion, severe headaches, and seizures are all symptoms of the illness. By the way, some people do report the illness being triggered by an infection.
    • russ151
      russ151 jackie00198

      Posted

      Yes it's ok I kind of know something's not right I will persist in finding out but  I am not going to fight this anymore keep trying to do the things I could I just can't do it it's a shame I was looking forward to a fresh start of things with my life 
  • Scoobydoo65
    Scoobydoo65 russ151

    Posted

    Hi Russ, I agree with Jackie, it sounds very much like CFS/M.E.- yours has followed a smiliar pattern to mine- recurrent sinus infections,  migraines, muscle spasms (all part of M.E.) and had to stop work due to exhaustion in the end(also did the gym prior to realising I was ill). There are lots of wonderful self help sites for folk with CFS/M.E.- glad to share these in a private email with you. Some folk will understand you are ill, some folk will not- its how it goes, sadly and you find out who your true friends are- but things happen for a reason and I believe it can be a catalyst to starting a better life than you had before.Email me if you would like the sites xx  
    • russ151
      russ151 Scoobydoo65

      Posted

      Hi thanks for your advice I have spoke to a lady at a me clinic she was very helpful I am awaiting a email with all the information of people who can help locally to me I will change my doctors surgery soon she has listed a few doctors who are more supportive at another practice to get me the right referral I am seeing a general specialist soon so hopefully can point me in the right direction just out of curiosity do you take any medication for the migraines I have been put on propapanol bit it's made my sleep worse I feel really lonely at the moment no real answers and how do I get better or is this it I have never claimed any money from the government not sure how to go about all these things ?
    • Scoobydoo65
      Scoobydoo65 russ151

      Posted

      HI Russ, Please excuse my late reply - I am in he middle of moving house-so all a bit hectic here. I'm glad you've got some support now with help with M.E. locally. With the migraines- I had been on sumatriptan for the last 3 years- only to find out recently that these, combined with fluoxetine(prozac) is toxic to the central nervous system (crazy as I wasnt told!) only found out by chance by re-reading the label inside the box. So, please avoid those. I tried acupuncture, which was free through my GP and that worked very well – so that might be something to consider. Also maybe have a food allergy test- I've found my migraines have lessened now I am no longer eating food that my body doesnt like(if we can cut donw on any inflammatory changes occuring in our bodies and lessen the toxic load ie avoid fluporide, chlorine, mercury(filter tap water etc), that can go a long way to helping us feel a little better).=10ptAs for benefits- yes, it seems very daunting but hold in there- things will unfold as they are meant to in time. A good place to start is benefits and work- lots of great info and tips on there re benefits and a forum too so you dont feel you're alone in all of this. Hope that helps xx 
    • russ151
      russ151 Scoobydoo65

      Posted

      hi no problem on the late replyhope the moves going ok, the migraines have actually gone but its left me with the same kind of throbbing pain on the left side of my head where it all started from all down the left side of my neck ,shoulder arm even my leg today.How is your sleep? its strange i feel like my brain wont switch off no matter how tired ,i can  honestly say i havent had a good nights sleep since all this started how long did you have it before you realised you had it ?i had symptoms for a year and a half then 3 months after a sinus infection i am a different person i still wonder what it is if it is  m e or not i had auto immune blood tests came back fine but do these need to be done by a infectious disease specialist?i try to not eat chocolate and dairy products thanks for your tips really worried my breathing when i try to exercise its really poor and i just dont have the energylike my lung function isnt the same i see another specialist friday hope he can help instead of another doctor saying it is anxiety !! i need to get the ball rolling for benefits i feel unsure what to say so far i havebeen diagnosed with servere anxiety and servere migraines thanks for your help how do you feel with things? i feel so lonley and feel i cant offer anything to anyone anymore i am just so confused with what is going on i have no support from anyone in my family or friends thanks againxx
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