Please help a lost soul out

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Guys, Im in a real rut here, I could use some help.

For the past 6 months I have had a whole host of complex issues that may or may not be related. The common thread was initially an on/off tiredness and fatigue. But it was mild though always there.

As an active person (until recently) I ended up injured in a few places and had to go to rehab with a PT. My inury list was embarrasingly long.

Exactly 2 weeks ago I went to a rehab session that was signifcantly intense. When I got home I was shattered, like I had run a marathon. Over the next few days this would develop:

- Extremely weird fatigue, I would say more along the lines of malaise and unwellness.

- Arms and legs are often cold, no matter what I wear. They are cold to the bone

- Migraines. Started last Thursday and wouldn't leave me. I feel like there is a game of football in my head. It's so strong I had to take a few days off work and only got back today. But its not abating, VERY strong and even 'Migralieve' is not helping that much. 

- Migraines causing pain to radiate to the eyes (especially back of the eye). Also cheeks feel numb

- Chills and fever like feeling, but always at my normal temp range of 36.2 - 36.5.

- Symptoms worse after walking or any physical exertion (other than sitting on the sofa).

- Concentraion fluctuates but I am never able to think straight, especially now with migraines

- Mood is super low most of the time (borderline depressed but not suicidal), but mostly because of the symptoms. When I take strong pain killers and symptoms improve, I feel happy again and wish I am like this all the time.

- Lost 1kg in those two weeks (not trying).

- Muscle and joint pains that radiates from one spot to the other

Bit of history:

30 year old guy

Lost 55kg (120 lbs) in 3 years

Was physically active until my injuries and now this mess is keeping me out.

Everything I have read online keeps bringing me here to CFS. But I never had like an infection or a trigger that I can remember. Also until the recent episode that started two weeks ago I was mostly OK. Now I feel like I am properly sick. Day to day stuff like going to work, groceries, travelling to and from places is just really difficult and painful...

What's going on? I saw like 6 different doctors who have done a whole bunch of tests on me that all came out negative. We even did the ANA test and nothing showed.

Should I maybe quit life for a few weeks, stay at home and just relax, maybe that will improve things? Or do I just accept that I probably have CFS?

1 like, 9 replies


9 Replies

  • Posted

    Hi if you can take time off and rest it would be a good idea I made things far worse early on sounds very similar to Cfs or fibromyalgia.Maybe you can try and get a referral to a Cfs specialist or rheumatologist in your area as they will ask for all blood work to make sure it's nothing else I would try and find out what's going on it's only natural but try not to let it stress you out try and listen to your body you will find loads of helpful people on here to advice you too hope some of the information has helped
    • Posted

      Thank you! Difficult not getting stressed out at this point. A combination of work, finance, health, personal factors. None is great, and this is not good timing. But you are right, I have to listen to my body, even if it means completely dialing back on most things for a while (which I am doing). 
    • Posted

      I know the situation might not be good in short term job finances but believe me If you can rest for as much as you can please ,I didn't for years as docs never pinned it on anything other than depression the usual so I thought working harder going to gym would help unfortunately I am unable to work but slowly I am getting better if I would have known all them years ago I wouldn't hesitate to have quit my job .stay positive like you have said you will be ok it's hard not to worry I know easier said then done but i believe through my journey staying positive has helped a great deal when I was stressed and worrying it was without doubt making my symptoms worse let us know how you get on with things I found a lot of support on this forum as most of my friends and family didn't understand unfortunately keep your chin up
    • Posted

      sounds harsh!! Agreed, thanks for the advice. I mean in my case I am already immediately dialed back on everything since the recents symptoms started. Like for instance, I used to walk to/from home to the station, now I take the bus. At work, I used to go out at lunch breaks, now I just sit on my desk eating lunch I make at home or order online. I avoid stairs, take lifts everywhere. Basically do the opposite of what I have been telling everyone to do for years to get fit. The opposite of staying fit. I am even thinking of hiring a taxi service to get me to/from work so I avoid walking to bus stop and from station to workplace. 

      Grocery, I switched to an online supermarket. If I want anything, I will buy it online and have it delivered.

      It's a lifestyle that I loathe (though it sounds easy and pampered). But health comes first.

      Still, despite all of this, I am finding my symptoms not improving. I would say they have plataeued. But I am not in a good functioning spot. Worst thing is the cold, my hands and legs are so cold no matter how much I wrap up. Pins and needles type of cold and numb. Fatigue is omnipresent. The migraine comes and goes but when its here I feel like an axe is attached to the back of my head.

      This is why I am seriously thinking of just calling it quits on work for a few months. Maybe go back and live with the family for a bit so I dont feel so alone. I am single and live by myself, most of my friends work so they wont be with me on this. I have to fight this fight alone, with family. It's so tough when only a few months back you were at marathon fitness. Now this. So depressing, I feel like someone has stole my life away and left me as an empty shell. sad

    • Posted

      It's very frustrating condition everyone suffers a little different ,I know what I can do and I can't as and how my body feels I haven't crashed for a while as I try not to do too much I was very active before this I kind of new something wasn't right for years after a respitary infection .

      Its very hard for people to understand I have found this out, I have given up trying to explain this to friends as I have been labelled as suffering from anxiety depression made me worse and some gps wish they should be more aware of it some gps are most are not to be honest let's hope time is a healer good luck hope with things

    • Posted

      I've read stories similar to yours again and again. Even to the point of people being at "marathon fitness." I used to go to the gym several times a week and work out with weights. I think your idea of stopping work and living with family is a very good one. That will maximize your chances of recovery and provide you with support and people who care. It is possible to recover from this--especially since you're young. Just remember that this illness is a marathon in itself. It's not a sprint. So patience is the key word.
  • Posted

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  • Posted

    You mention having gone to 6 different doctors. Did none of them mention ME/CFS when your tests came back negative? If so, that's very very sad. Just from reading your post, it sounds to me like you had a very mild case of ME/CFS before your rehab session. Then your intense rehab session caused you to relapse and go to a more moderate or severe case. This is very common, and in fact happened to me too. If my doctor way back when would have only explained to me to take it easy due to the possibility of relapse, he might have saved me a lot of grief. I wouldn't say you need to "quit life." But you need to cut way back, pace yourself, and greatly curtail your activities to give yourself a chance to recover. In the meantime, you should go to an ME/CFS specialist, preferably an infectious disease doctor, or even a rheumatologist. That way, a diagnosis can be confirmed. If the doctor is savvy, as mine was, he should be able to look at your negative labs, ask you a bunch of questions, do a physical exam, and thus determine whether you have ME/CFS. Again, I can't stress enough the importance of rest. Especially if you do have this  illness, you greatly lessen your chances for a full recovery by pushing yourself. By the way, ME/CFS can be triggered in many ways, not just by an infection. Some other triggers are a virus or any physical or emotional trauma. Best of luck to you. 
  • Posted

    My thinking is that if I quit my job and stay at home doing little for a month or more, surely that will increase the chances of recovery. I will lose money but win health and to me that is a trade off I will do everyday!
    • Posted

      I think you would be making the right choice my work was really flexible but I was so ill they had to let me go they even said I can have my job back just never recovered enough be honest with them about things

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