Severe Turn for the Worse...

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Hello,

I am 32 years old & have had CFS/ME since 2006. I was essentially bedridden for all of 2007 & most of 2008. I then saw some minimal improvement, enough that allowed me to perform at low-level physically demanding jobs. I'm going to skip the decade that followed because I'm sure most of you know exactly how it went. Present day, I'm a Father of an 18m little boy, a home owner, & have a desk job that is incredibly conducive to my (secret - employer is unaware) illness. About as good of a life as anyone with CFS/ME could ask for.

Well, since Xmas-2017 I have taken a severe turn for the worse, & I'm feeling very lost, alone, & defeated.. Almost to the point where I want to give up completely. On Xmas night, I indulged in alcohol more than i had in years (20ish beers - up until 4am). I don't know what else to say about that besides I just let it all go. I have avoided alcohol almost entirely for the past decade via this illness but I just needed the release that night. Man, am i paying for it since. I woke up with a very strange pain under my jawline that ran back, all the way down my neck. The muscles that hurt me are best identified for you guys as if you were trying to such something through a clogged straw, all the way down the back of my neck. I have also developed unexplained chronic diarrhea. Not exaggerating, I am going #2 almost 30 times per day - pure liquid. I have a lot of blood built up in my sinuses, an insane amount of sinus drainage & of course all of the other wonderful & common symptoms of CFS/ME.

Can anyone advise me? Can anyone provide their own similar experiences? Can anyone simply provide personal support via text on this thread? I just feel utterly alone.. None of the people closest to me in my life have ever understood but i always just accepted that fact & dealt with it the best i could & carried on. Well, not doing so well this time. As all of you with CFS/ME know, life can't, & doesn't just stop when something like this goes wrong for you. I have a little boy who depends on me.. But i tell you, with things going like this, i won't be able to do any of it.

Anything anyone could say to me that has CFS/ME would help right now, TY...

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11 Replies

  • Posted

    Hello hun

    I can totally relate to you 100%

    I had me/chronic fatigue all of 2009/2010 and like you recovered enough to work part tim. Roll on half way through 2016 i started to develop severe pins and needles in my legs it started slowly and intermittent but within months it was 24/7 and my legs and arms. I couldbt walk the pain in my legs became so bad i needed a stick. The progression to where im at now has been alarming. I cant go out i am in pain every single moment of every day. I cant tolerate meds.

    I have now as of last nowbeen seeing a neurologist and had an mri of head neck and spine 2 weeks ago. Still waiting fir results.

    It could be m.s or nerve damage but if not its severe m.e

    Either way this has literally taken my life from me. Ive had to give up my job. I get pip but i would rather work and fet ny life back i am a single mum (2 late teen still at home) and its robbed me of everything. Im not as young as you but still only 44 .

    Did you kniw that with m.e we have a sensitivity to alcohol and if i have any more than 1 glass of wine im ill for days.

    If you want someone to chat to let me know. Take care

    kelly

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    • Posted

      TY for sharing your story, Kelly. I'm very sorry to hear of your pain & loss of quality in life. Reply back when you get your results, please? I've joined here today to find comradery, & also to provide it to others. Keep fighting the good fight...

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    • Posted

      Atoms

      Have you been tested for b12.

      I have been having b12 injections every 12 weeks for well over 10yrs and i think you have lots if symptoms of this. Id get app asap and ask it to be

      checked. I got reaults this morning. My brain scan was normal(debatable!) But i have abnormality with some bones above temples and need a ct scan for that and also some sort of lower spinal stenosis. The medical terms used completly baffled me but i need physio. On top of the m.e.

      Wonderful! Anyway i would check your b12 alchohol absorbs all your b12 and if thats low would explain a lot

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  • Posted

    Hi there,

    You are not alone. You are doing great but you have had a set back due to the alcohol. However we all need a blow out sometimes. You must go to your doctor and get checked out to rule out anything else.

    The dioreeah will be dehydrating you and the alcohol already did so you need to ask doc for something to stop the fluid loss and you need rehydration like diarolyte. Remember to eat red meat. Liver. Eggs and if it is possible get time off work for flu if you dont want to mention this. Go to bed and sleep between teatime and sipping water. Also hugely important is daylight. Not easy in this weather but sleep in front of a window during the day.

    Hope you enjoyed the blowout. I have made that mistake too 😉

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    • Posted

      Hello kezza,

      TY for the encouragement. I'm aware that the huge night of alcohol is what sent me spiralling like this, but Xmas was almost a month ago now. Do you believe it could still be putting me down like this? After 10+ years of having CFS/ME i do know how 'setbacks' can last long interims at times, but I've never had the constant diarrhea like this. It is very, VERY worrysome. I've visited my doctor (doesn't believe in CFS) & she gave me a stool same kit but told me if the diarrhea stops, don't worry about it. Well, it stopped so i didn't do it but now it's back - taking it in tomorrow.

      Why nap by a window? I've never heard this tip..

      TY for responding, it helps....

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    • Posted

      Daylight or preferably sunshine but we don't have enough hahaha.

      Have you read Michael Crawford's story of his CFS?

      I had glandular fever then CFS/ME . I read about Michael Crawford and how he recovered.

      Sadly we don't all have time to rest in the sunshine but luckily for me my husband got a job in a warmer climate and i was able to take a few months off.

      From what I have read it's a combination of genes that make susceptible to CFS and a bad illness. But it strips your body of all reserves of B vitamins and other vitamins and exhausts your immune system.

      So the only way is to sleep and hydrate and eat well. Daylight is very important for the vitamin d.

      Also be aware that when you are ill like this you are not capable of dealing with stress. That will bring you down and then it becomes a vicious circle.

      It's difficult when you have to earn a crust but the less stress the better and rest food and sunshine.

      I had a good doctor she diagnosed me and then a bad psychiatrist who said it was all in my head. I then luckily has a second therapist who he sent me to and she had suffered CFS so told me to ignore him. Hahaha

      Trust your body and pester your doctor if you think it is something else. And change to another doctor if she doesn't pull her finger out.

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  • Posted

    I am so sorry for what you're going through. I can totally relate because I, too, had a severe downturn about 2 months ago. A couple of days ago I felt so ill I could barely talk to my husband. All I could do was post on this forum for support, which I thankfully got. Are you getting any kind of medical help for you diarrhea? From your post, it seems like that is an issue that should be addressed immediately. There are so many terrible symptoms that can happen with ME/CFS, especially during a flare or relapse. Are you seeing a doctor that specializes in ME/CFS? I’ve found the most helpful thing during my relapse has been to get plenty of rest and to not push it. I know, easier said than done, especially with a child to take care of. I think you probably need to cut back on work. I know that this can be extremely difficult financially, but if you don’t cut back, your body may reach a point where you have no choice. That’s what happened to me. I tried to push through my illness at work and collapsed. I could barely make it home. Are you the sole source of income in your family? Is government assistance possible? I live in the U.S., and was able to get on Social Security disability. You are not alone! I am going through a similar struggle as you, and I know how soul-crushing it can be. I’m feeling a bit less ill today, so I think it’s important to remember that things can get better. Please continue to post and let us know how you’re doing. Also, if you have any questions for me, I’m happy to help in any way I can. 

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    • Posted

      Hello Jackie, TY for your support.

      Any/Every Dr. I've ever visited doesn't believe CFS is even a real thing. One told me this, & I'll never forget it... 'imagine you took your car in to a mechanic because it isn't running right & explained all of what is happening. Then the mechanic tested the vehicle for every possible thing that could be wrong but every test xame back clean. The mechanic would tell you there's nothing wrong with it & send you away'.... That is what the doctors did to me after umpteen blood tests. Car = our bodies in this analogy. So disheartening...

      I have a stool sample kit that I'll be taking in this week to rule anything else out. I've never had diarrhea as a resulting symptom of over-doing it via CFS & i have MANY instances over the last 10+ years where i have overdone it, so this is worrysome. I actually pray that it is something else because if this is the way fwd in life with CFS - no TY.

      I'm surprised to hear you're granted disability reimbursement for CFS, as anything I've ever researched says it's always denied. I'm happy for you that you've 'won' on that, what steps did you take to get it?

      This constant diarrhea hit me a couple weeks ago, lasted 5 days & went away for a week. I then began doing things around the house again; trivial things that we're all limited to with CFS... & then it xame back with a vengeance this past Friday.

      TY again for reaching out, Jackie. & also TY for making me feel welcome & not embarrassed...

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  • Posted

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  • Posted

    Hello there.  You really have it bad right now eh?  OK first things first.  You did the right thing, you got online and asked for help.  Give yourself a pat on the back.  So here's a few thoughts and I hope some of them might help.  So many of us deal with this horrible condition without proper support because it's so badly understood.  None, and I mean none of this is your fault.  You deserve support and understanding from people around you but they probably need your help to give it to you - I know, it shouldn't be like this but it just is.  Try looking online for resources that explain it - I know I've found some useful ones.  And start telling people around you about what you are going through on a daily basis as well as in this current crisis, including the professionals who should be helping you too.  Just try expecting them to get it, challenge people while believing completely that you totally deserve their understanding and support.  I'm still amazed that those around me don't get how awful I can feel because I don't look ill!  Spell it out for them.  And don't panic.  Dad's get ill - I'm a mum with 4 grown up kids.  If you just keep asking for help then someone will eventually give it to you.  Just please please don't give up hope.  I don't know where you live but some countries have laws which prevent employers from discriminating against you because of your health.  Try to get your doctor on side to see if that would help you to reveal something to your employer who, you never know, might actually be supportive.  And remember you're in a crisis at the moment and it's likely to pass.  I'm sure you  know that fighting your way through it isn't the answer,  You need rest and care and I really really hope you are going to get it.  You are not alone.  Other people, me included, are going through the same as you right now.  It's hard and you should be so very proud of everything you have managed to do and achieve up till now.  But I'm hoping hard that you're going to get the support you need very soon.  I send you my very best wishes.

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  • Posted

    Hi Artoms

    I’m a 30 year old male and have just had a huge relapse after being at about 90% for 7-8 years (had no CFS diagnosis then but inadvertently I was pacing as I knew my envelope). It’s been four weeks and I’m taking things really easy - at about 40-45% now 

    I got married and went on a honeymoon to USA got really sick there and upon return on the 15th of janurary have been pretty much house bound. 

    Should have seen the warning signs coming, but pushed to hard

    Just wants to check in to see how you are doing mate, you are not alone and I too am struggling through this, it’s just slow and steady and I know we will get better

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