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I really hope that somebody on here can offer me some insight. I am 24 and since I was a young child I have struggled with tiredness, I was diagnosed with depression at 22 and put on venlafaxine which I still take. However, im not convinced that the tiredness is related to depression and I feel depressed because I am so tired rather than the other way around.
I have been seen by a consultant who has put me on 10mg Dexamphetamine per day but even on this, I still dont feel awake and still nap for 2-3 hours in the afternoon along with 10-12 hours sleep at night.
All of my previous bloods have been normal, Ive had the blood test for narcolepsy traits which came back negative. I also had sleep studies and dont have sleep apnea. I eat well and try to do some exericse such as swimming reguarly.
I feel like the Doctors think i'm making it up but this is really impacting my life and I dont know what else to do.
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I don't know what others on the forum think but although initial advice for fatigue is to do some exercise, but advice for cfs is to do graded exercise only for which you need special advice. So just relax in the sauna instead for now.
One more thing, getting a diagnosis will get you some protection under the disability act, which can go some way to relieving work stress.
to diagnose CFS/ME they need to rule out a bunch of other conditions. there's about 10 specific ones that they blood screen for. ME/CFS gets treated as a disease of elimination i.e. rule out other conditions that have a similar presentation.
they then use the ME/CFS diagnostic criteria as set out in the ''Oxford Criteria'' if you live in the UK. the CDC criteria in the US, the Canadian guidelines in Canada and so on.
however, there r a few definite symptom markers with ME/CFS. the major one is post exertional fatigue. have a look at the guidelines for diagnosis. the ME asscoiation (UK) have an advice line and good info. on their website. also the NICE guidelines are comprehensive. sorry to hear you may have this condition. on the positive side, however, early diagnosis with early interventions tend to give better outcomes.
all good luck
I find that 30mins a day really helps get me going in the morning. I believe that several problems are contributing to my tiredness and I have been slowly trying to eliminate them and the SAD light definitely works for me. Its not a cure but I know the days when I didn't use it.
I was tried on anti-depressants for a while in my earlier 30's and whilst they can be handy for not caring as much that you are tired and may help us get through certain times (as of course being so tired all the time can become extremely depressing) personally I didn't find them overall helpful and came off them after a while, but they do have their uses, particularly certain types that are used to help you sleep if you have insomnia, again they may not make you feel better overall but sometimes I found it a relief to have a break from feeling wired at night.
I think you are right to listen to your gut instinct, so many times I doubted myself and thought maybe they are right about it being psychological but I now know this is not the case. If you truly feel within yourself that you are depressed because you are tired and not tired because you are depressed then keep listening to yourself and try and find (easier said than done I know) a doctor that listens to you to.
I often find you can't win with doctors, if I rest you're told "no wander you are tired you don't get enough exercise". If you push yourself you're told "you say you're tired all the time but you manage to do this exercise" with a look of doubt as if you are making it up.
Keep listening to yourself Rachel, you know yourself better than anyone else, it's impossible to describe in words to someone how this feels when they have no frame of reference from personal experience. My fatigue now feels very different to when it did when I was younger, so also don't feel initimidated about describing any changes that happen in the future to doctors. I used to feel insecure about being believed when things changed, but looking back I can now see this was just all part and parcel of the same thing.
Personally one of the only things I have found to help is restricting carb/sugar intake (but I do just mean help, not cure). The Fodmap diet may be worth a go if you haven't tried it already, but doesn't help everyone. I mostly find it helps with feeling clearer headed, rather than having constant brain fog). I can only assume this is to do with the belief that sugar causes imflammation in the body, but other than that am unsure why else it would help.
The only other thing I found helped is sleeping with my head elevated/raised (actually raised the feet of my bed at the head end), my doctors/specialists think this is odd and there's no reason for it, but again i do it cause it helps and can only assume again this is to do with imflammation of some kind and maybe draining away fluids. I really am at a loss to explain it myself other than that, but it helps so I don't knock it, even if others do, i'm far too long in the tooth now to care
You may over time just discover odd little things that seem to help, if you do just run with them, don't listen to what other people say about there being no rhyme or reason.
We know you're not making it up and hopefully after talking with people on here who have similar experiences/symptoms to your own, your doctor may slowly come to understand or at least appreciate what you are going through. It took my doc a while to really appreciate the impact on my life, but we got there in the end
I think my main issue, as mentioned by Kirstie is that I still manage to get up and work and do some form of exercise most weeks. My struggle is in emphasising to the doctor how difficult this can be and how much effort goes into getting through each day without going back to bed.
You have given me lots to think about and I have found a local support group that I have contacted to attend.
My main fear is that once absoloutley everything is ruled out, I am left with a condition for which there is little understanding and no cure. I guess it's one step at a time from here.
It's gutting I know to find out you have something that there is no answer to, but remember that they are doing much more research on this condition these days, so even if your doc doesnt understand you yet, there are still researchers and groups who are in the process of understanding and are getting much closer to the answers to help people like us
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