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Hi, I'm new to this forum so I'm sorry that this is all going to come off as a bit of a complain, thank you for reading and I would be grateful for any advice you may have.
I was diagnosed with post viral fatigue this year following a bad virus. Before that I was pretty healthy, I walked to work everyday and was at the gym a few times a week. Now, although I have recovered a lot from when it first hit, I still struggle day to day. Something as small as walking up the stairs knocks me ill, and a few hours out can leave me aching for days. Even cooking a meal isn't usually an option.
I'm getting frustrated because although I can accept that nights out and shopping centres are out of the question (I'm in my mid twenties, so what I usually did), I'm still working full time, even though this means that most of my time off is spent resting (in pain) to try and keep myself fit for work. I can't quit my job because we need the money but I'm not coping very well. My employer is usually good but because there is technically nothing wrong with me (my doctor thinks it will pass, and its not classed as a disability) they won't make any allowances or accomadations, which means that its not unusual for me to work very late nights or six days a week. My performance is suffering and I worry about dismissal. I want to work part time to give myself more rest (and be better at my job) but I won't be able to pay the bills, and my family don't think this is an option for us.
I've tried going back to the doctors but although she has run blood tests etc, I kind of get the feeling that she doesn't see why I'm bothering her, as she just tells me that recovery can take several months, and its not quite been six.
It just leaves me frustrated because I feel so guilty about being ill. Although they tell me to rest and recover, it seems to be as long as I can manage pretty much as I did before. I know I put too much pressure on myself, but I feel as though I'm doing something wrong by needing help now, even though I've worked my whole life.
Does anyone else feel this way?
Thank you. Best wishes to everyone.
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My story is pretty similar to be honest, been going on for about 14 years (after having glandular fever)and after numerous visits to GPs got one to listen and am currently waiting to see the CFS specialist in a couple of weeks. Could you ask to see another GP for a second opion or ask do they think it could be CFS? Even though there's no cure or real known treatment at least having a diagnoses would give you something to go on with work and going part time, espically as its covered under the equal opportunities act (or so I'm told.)
Like yourself I was working full time and ran myself completely into the ground and was off sick for awhile. On going back I used my annual leave to reduce my hours and after a vist to occupational health am now working 4 days instead of 5 (but had to fight for it and currently only for 6 months!) like yourself work took everything out of me (still dose) and evenings and weekends are used to rest enabling me to face work (although at a struggle.)
I wish you good luck and hope you find some answers, help and support. The good thing about this forum is that you know you are not alone and people give good advice and support!
Depending on how tired I get, my symptoms range from tiredness and aches to dizzy spells, adversion to light etc. I wouldn't like to list them all. I have considered using my annual leave in a similar way, but my employer is not too keen. I was off for a couple of months, but after a phased return was back to full time. Speaking to occupational health may be an option though, my employer mentioned it but I got the impression it was a bad thing from them. Am I ok to ask how you persuaded your doctor to give you a diagnoses? Mine has confirmed post viral fatigue but my understanding is that CFS is the long term version.
That's good news for your specialist appointment, I hope everything goes well
I was lucky that I was eventually listened to. Try occupational health they are there to help you. As others have suggested see if you can can be signed off to enable you to rest and try to recover.
Take care and all the best!
This illness you have is post viral fatigue and if you rest you can recover within 6 months ..if you don't it becomes cfs chronic fatigue syndrome which you can recover from over years but you can get stuck with too. They are real illnesses and your GP can sign you off sick for post viral fatigue ..
they are illnesses that entitle you to benefits ...
I think you know that if you don't stop working full time your body will force you to..it can get worse ..dizziness room constantly spinning ..unable to get out of bed ..having to use wheelchair ..go and have a good chat with your GP about cutting work down or being signed off sick for 3 months it may just be the ticket to avoiding a long term horrendous illness ...
I think you hit the nail on the head, I was signed off for a couple of months but I didnt have much choice but to go back when I did as I was getting reduced to SSP. I am becoming worried that I won't recover as long as I'm working so much, but my GP/employer has not been supportive of alternatives, and I don't think I'll qualify for benefits as I've not been diagnosed with CFS/been ill less than six months.
I do appriciate your advice, as I am having some of those symptoms already, and I think you are right in that I may have to push my GP further for more help.
Good luck with your recovery. Thank you.
I can't stress enough what others are saying, you need to rest up and take life easier NOW. It may be inconvenient in the short term and take some reorganisation of yur life but your long term health is at stake and believe me, as someone who has had his life ruined by CFS for the last fifteen years, it's no fun. Plenty of others will tell you the same...
You also need a doctor who takes you seriously and supports you better with work, referals to specialists, etc.. and if they say rest, do it, it's not optional but an absolute necessity.
You have it in your hands to influence the degree of your own recovery so please do take that seriously, you don't want to be saying ten years down the line.. "If only"
Oh, and best of luck, it can feel quite lonely coping with it yourself we know, you'll get a lot of advice from other sufferers here though and it will all help, if you take it.. ....
In an almost identical situation, although 'ahead' of you in that i started out as PVF but this was 18 MONTHS ago now. I now have the CFS label after months of exhaustive tests which by all accounts on papaer i should be the picture of health. Before this illness i was a semi-professional trialthete these days i struggle to walk any distance, my legs feel so weak. I suggest you look up claiming personal independence payments as you can claim this even if you work. It might be useful to ask your GP about having CFS if you are concerned about a label. This illness forced me to give up my job as it was physical in nature but truth betold i could not hold down any job now as the fatigue is too extreme, i only have enough energy to make meals and look after myself. I've tried fighting this illness but i just get worse. I am hopeful i can recover still. Some alternative practitioners have said they believe i have adrenal exhaustion, you might want to look that up. Good luck, i hope you get well soon, some people do, some people like me it seems stay ill much longer.
In the December I started with digestion problems and went into A&E with suspected gallstones. An ultrasound was clear. As my digestion problems progressed I was referred to a Gastroenteroligist who found a small ulcer during an endoscopy, great you may think all sorted. No, during this time my energy levels were falling week by week. I used to walk 2 miles to the train station daily and started to find this a daily struggle, so my Vitamin D was tested and found to be low. After weeks of high dose Vitamin D I am now off work and still weak and with poor digestion.
I feel like my body doesn't have the energy to run properly. I am short of breath, weak and losing faith in doctors. I have had so many blood tests and I have now been referred for Chronic.
I just wanted to speak to someone with similar experience. I miss my running and long for my old life back. I'm 37 but feel 87 as daily chores drain me!
My question is what happens if all your blood tests come back clear, what do the NHS do next?
I will continue to fight but I would like some light at the end of the tunnel.
Sorry if I went on a bit I hope you are feeling a bit better wish you the best with your recovery.
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