chronic fatigue syndrome
pauluk
Posts: 193 Forum Member
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I`m now a 30 year old male. I have had this condition since i was 15. I had a lot of migraines when i was younger. Always ending up in hospital. I was still fine then. I was fit and healthy. Swimming, playing football ect. When i reached 15 that when i started to get poorly. I still went to school but i was more tired then ever. Concertration was going. In my final year i missed nearly the whole year expect for the final few weeks. I missed school very much. I was crying as to why i was getting so tired and weak. What was happening to me? I did go to college and worked in the coffee shop there. I always went in late because the morning was the worst. I went to 2 colleges as the year was going by i got much worse. I couldnt walk one day when i got to college. My legs gave up. I was thenn in a wheelchair till this day. I missed my young adulthood. The things i enjoyed was taken away from me. I will ask any questions you may have that i havent answered. Please share your experince about chronic fatigue syndrome. I also want to hear what other people think without this condotion. Thanks.
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Incidentally I get migraines, I have done on and off since I was in my teens, sometimes there has been years between them ans then they're back. I had no idea that they were connected to this condition.
Make sure you rest at least 3 times a day for 30 minutes. eg. morning, afternoon, evening. Add a fourth at night before bed if you wish. Rest lying down on your bed and close your eyes. This will give you a bit more energy to do what you want on the day. Drink lot`s to as with this condotion you can get dehidrayted. Listen to some music you like on radio or youtube. It will make you feel at ease.
I suppose you're a member of a support group to share info and tips with other sufferers?
The doctors don`t know how i got the illness. There are some tablets which help stress and sleep that you get with chronic fatigue syndrome. I`m not a member of a support group anymore. It had to close. Please ask your doctor or go to a consultant to help you treat your condtion.
It does get you down. It makes you sad and angry and stressed. However you learn how to deal with this illness in time. Some days are better then others. You have to think of the postives aswell as the negatives.
I have had chronic fatigue for 15 years, but it is undiagnosed as my Doctors are useless, they test me, they find nothing, they offer nothing , I go away, I go back when it all gets too much, they test , the tests are clear, I go away, so I gave up trying to get a diagnosis.
The closest I came to being diagnosed was a nurse who told me after I collapsed yet again and ended up in hospital, that she was 100% sure its what I had, but the Doctors dont want to know.
When it first hit me I spent months unable to walk, and had to crawl to the toilet etc, it was agony and my arms and legs were so weak and painful but still nothing was diagnosed.
Just been back last week with so many different symptoms, they tested me yet again and yet again all bloods are normal.
I am at about 60% on the scale at the moment, having to rest lots and in a bit of pain, irregular heartbeat,complete exhaustion, brain fog bad sleep pattern etc.
I am glad you have been diagnosed, I just wish that someone would listen to me after all these years
There are clinics that can help you manage it - pacing, relaxation tapes, sleep hygeine etc etc - all have an effect - but I kept on going back to work too fast.
Currently I am not working - other than caring for an ageing mum - and that does mean that I am finally able to manage the CFS as I can rest up when I need to and maintain a status quo.
I have to say that after about 4 years of CFS - I really did need the help of anti-depressants - depression and CFS are not the same thing - but a long term illness that cuts you off from your real life does - inevitably - drag you down.
Right now I feel like I'm over the hump and CFS is simply an irritant - but those getting it younger are far more likely to get over it entirely.
Do go online - do join forums - do genuinely try things that sound irrational - you will come out of this - patience, when you're young is really tough - but hang in there and celebrate the small achievements - even if that's just getting up and getting dressed.
There's a whole host of people out there going through the same thing and it does help to share even when it's the last thing you want to do.
I always go by the mantra - if I can do it - it will be a piece of cake for anyone else
I believe CFS/ME is a set of symptoms on top of another causation, and the cause can differ from person to person. That is why there is no consensus as to what causes it, for everyone the cause is different.
Much like a headache can have many causes, it doesn't mean headaches don't exist.
My symptoms improved drastically following a hysterectomy but I still have migraines, severe fatigue, brain fog and joint pain (some of which is arthritis, spinal degeneration- shown on scans mentioned above).
All you can do is try to remain positive, be accepting of the realities of your circumstances and try to work with them- pushing yourself a bit when you're feeling better, resting when you're really struggling. Small goals. Symptomatic medication but not so much that it knocks you out. Good diet, exercise where possible. Also, accept that other people might not understand and some may not take it seriously. That's their problem, not yours. Set your own limits and try not be railroaded by trying to meet others' expectations. They're not in your shoes. You are and you are the one who has to live each day.
OP, I'm sorry it has been so debilitating for you and hope you find relief wherever you can
Now I'm just really tired and my legs are aching.
Thank you so much. You are absoutley right in eveerything you just said there. Small goals is key to having a better life. It doesnt have to be exercisce. it could be baking, playing video game, playing board games or going out socialing. Not eveyone going to be understanding. Keep postive and try and make new friends where and when you can.
Somebody at work said the same thing. She combined hers with "pycnogenol" (sp) I believe, if memory serves. Swears by it.
For those of you with the same condition, how much medication do you take for it?
I take more medication than I can count, max of tramadol at the moment too but that's not working for me. I still have days so bad I can't get out of bed. I couldn't possibly work, if I'm out for several hours, it's a wheelchair, I can't get far at all.
I have a friend with FM and she's just the same. Sounds like his Occ Nurse is clueless to be honest. It hurts and that's that.
ETA: Feel free to PM if you do want more info re the fibro and cfs x
become working class
it's a well known fact that the working class don't suffer from the problem
</;)>
Miner's daughter here, it didn't miss me out