CFS, What now?

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Hi,

I am currently going thorugh investigation for CFS. I have had Post Viral Fatigue since October 2016. I did manage to return to work in January but have been off again since March when my symptoms worsened. I think this is something that has been affecting me for years though as I was off work for 3 months over christmas 2015 with Vertigo and the same the Christmas before that. Also, whenever I get sick or catch a bug, that other people seem to bounce back from in a matter of days, I can be off for weeks recovering. I live in Scotland and asked my Dr if I could be referred to Dr Wilkes at the Western General Hospital in Edinburgh as I was advised to do this by a local CFS/ME group. My Dr looked into this and said if wasn't possible as all my blood results had come back normal. She has referred me to the Astley Anslie and I am waiting on an appointment to attend the CFS/ME support clinic there. I heard there is a fatigue clinic at the Western General, does anyone know about this and how you get referred to it? I feel like I am floating in no mans land, between Post Viral Fatigue and possible CFS. Its been 8 months since the onset of symptoms this time and I feel no further forward in understanding what is happening to my body. I just wondered how you all got diagnosed and what your experiences were?

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16 Replies

  • Posted

    If you really want to go there I would contact the office of Dr Wilkes and ask what is the criteria that needs to be met for a referral. Then you can go back to your GP. If they refuse ask then under what guidelines they are refusing. That usually does the trick. 
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  • Posted

    Hi Karen

    ?I'm in Scotland too and was part of the PACE trial under Dr Wilkes about 10 years ago at the Western. I got CBT through it which I found really helpful. Not sure what help they provide now though. Another thing I did about 7 years ago was the Lifestyle Management course which was run by the Thistle Foundation in Edinburgh. It was a course for people with longterm health conditions and I found it really helpful. Not sure if they still run the same course but might be worth checking out. There are also local remedial yoga classes which might be worth trying. Look up KICC Active Lothian. I would say that learning yoga is actually the thing that has really helped me the most along with pacing and healthy diet.

    ?It's a bit strange your GP saying nothing has showed up on blood tests so you're  not eligible for treatment as with CFS they normally do blood tests to rule other things out and if they come back normal they start to think you might have CFS if they can't find anything else wrong with you. You should maybe query this with your GP.

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  • Posted

    Hi.. it took me 20 years to get a diagnosis of CFS so at 8 months your doing OK.  I would also look into POTS as you mention Vertigo..

    https://patient.info/doctor/postural-tachycardia-syndrome-pots-pro  The 2 seen to go hand in hand  I have both  but only got POTS diagnosis last year even though ive been suffering for 28 years with it.  

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    • Posted

      That must have been so hard!I can't imagine what it must ahve felt like for it to take 20 years to get a diagnosis. 8 months in and I'm frustrated! Thanks for the information on POTS.

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  • Posted

    Hi Karen94114.

    I was just about to post something about CFS as my Dr thinks i have it after post viral fatigue. I bascially got ill in october 2016 as well and had terrible sinus infection and stomach bug, which wiped me out. I am left with muscle aches, some fatigue but not massive amounts, tender glands, sore throat, strange headaches and i cant do loads of physical activity. I am still skeptical so i am seeing an ENT as well incase its a sinus infection still lingering. What symptoms do you have now?

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    • Posted

      Hi Rob,

      I had a flu like virus in October which led to PVF. I also suffered from nausea. At the moment I have fatigue, its starting to improve, but generally I still feel tired when I get up, my limbs are heavy and ache (even my feet!) and if I do any physical activity i tire right away. I dusted and went to the shops the other day and that was me worn out. When this flared up again in March I decided to find out what my upper tolerance was and tried painting the garden fence. That wiped me out for 3 days. Since then I have learned to take it really easy. I also suffer from a sore neck, headaches, disturbed sleep, dizziness, shortness of breath, back ache, IBS, and the weirdest thing of all is a small facial twitch that is worse when I am tired... I was talking to my Dr about trying some supplements to see if they helped boost my energy levels but I'm a bit sceptical if these will really work. I have ordered some Ubiquinol COQ10 and have started taking Magnesium and Vitamin B3. I think it will just be a case of trial and error with these.

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    • Posted

      Wow, You could have written that for me, everything you said is the same . Even the facial twitch when i am tired is similar. I get a twitchy cheek and left eye when i am tired. Also i don;t know where the shortness of breath comes from.

      I have tried several supplements and the only thing i found helped was rest, gradual exercise and not getting stressed by it.

      I was generally a fit 31 year old before October, riding bikes, running etc and Dr deosn't know what else to do apart from ENT to check for sinus issues.

      I did get some Elavil to try to see if it would help as apparently a virus can effect the nerves and cause some strange symptoms. They can get over sensitive and this can cause you to be more sensitive to pain and affect your gut causing IBS. Its worth a try so will start trying that this week.

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    • Posted

      I also get a numbness/muscle twitch in my left cheek when I've overdone it. I get numbness down my left arm and at the bottom of my right leg at the same time. I was told it could possibly be due to a viral infection damaging the nervous system. My CFS was triggered by flu followed by glandular fever. I used to get IBS but have found changing my diet has really helped that. I've found breathing exercises really helpful for dizziness and shortness of breath. I've recently increased magnesium in my diet and feel it's helping a bit. 

      ?Just keep trying different things and hopefully you'll find something that will help. I also keep a diary and take note of things that make me better or worse. You might find that helpful too. 

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  • Posted

    There are a lot of problems with approaches to CFS in the NHS and the New York Times recently summarised some of the problems with the research here in an article called 'Getting It Wrong on Chronic Fatigue Syndrome?' - it could be worth reading that so that you have a better understanding of the issues here?

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    • Posted

      Just wondered if you have improved at all in the last 7 months Karen 94114? I have improved a Massive amount but i still seem to get relapses and currently going through one now where I feel mild Symptoms come back. 
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    • Posted

      Hi Rob,

      Yeah, things have also improved for me. I am back at work, all be it part time. I get relapses too but they are usually short lived, only lasting a couple of days or so. However, I am definitely not back to 100% normal, more 80%, and am learning to live within this. It can be hard. How have you been finding it?

      I have also been attending the Astley Ainslie support unit, which has been interesting. Bit sceptical about their GET approach, but it has been useful to monitor my activity and map how it affects my fatigue.

      I have also been taking quite a lot of supplements and, although I can't prove it, I think these may be helping, especially the Ubiquinol and D-ribose. What have you been finding works for you?

      Kind regards,

      Karen

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    • Posted

      Oh that’s good you have improved. I would say also about 80% but reading up on the net it looks like it can take sometime like a couple of years to feel and even then pacing is still needed. I have resumed back to normal routines but not pushed too far like I might have done with exercise, but learnt to rest when required. I still can get over tired if I don’t sleep well and have episodes of feeling a bit strange like the muscles aches and headaches etc. The ibs is still playing up and certain foods can give me cramps which causes some of the symptoms to flare a bit and make me feel a bit weak. Didn’t notice much difference with supplements but eating a bit more frequently rather then big meals keeps my energy levels up. I can get a bit tired and a cold feeling if don’t eat for a while especially in the winter weather. Do you still have any muscle symptoms? 
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    • Posted

      Hi Rob,

      That sounds really similar to what I am experiencing, and yes I still get muscle and joint symptoms. They are more pronounced when I have a flare up, or get really tired. I also notice that eating regularly helps my energy levels.

      I am going to the Dr today to get bloods done to check for food allergies etc., as I have suspected for years I have IBS but never had it diagnosed. It seems to be worse at the moment.

      I have just started trying Yoga for Chronic Fatigue (on You Tube) and was shocked to realise how out of shape my body has got over the last three years, and how demanding even simple exercises can be. Have also started meditation (which I was very sceptical about), but together these are helping me to develop a more positive relationship with my body again, which is nice.

       

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