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Not been officialy diagnosed yet but need HELP please

Posted , 7 users are following.

aly74
aly74

Hi all. Just joined. I live in the North West of UK. And as i type. I'm waiting for my GP to phone me. I had Pluracy in December 2015. Had 2 lots of anti biotics to clear it and have felt rubbish ever since...and I'm getting worse not better. I have all the symptoms of CFS. I've had all the regular blood tests and were normal. Now I'm doing my own research I know there are more specific tests that can be done..to do with Mitochondria. I'm waiting for a Hospital appointment but it will be mid April at very earliest and it's not with a specialist. I've just started taking Vitamin B Complex a few days ago. We go on holiday at the begining of April and I'm going to ruin it sad I have a four year old and we are a very active family normaly. I walked a mile last week and spent 4 days recovering. 2 days ago I walked 2 miles and did general house stuff. Spent yesterday in bed or on settee. Today my mum has got my little girl so i can rest. I couldn't even face walking to her house 5 mins away. My joints and muscles hurt and feel like they are on fire. I don't sleep well. Seem to wake up at night however sleepy I am. Apparently one of the symptoms is your body clock alters. So i find mornigs imposable. And with a child to get to pre school and dance class for 9am this is filling me with dread. Everything is such an effort and it's really getting me down. I've read that a detox helps. Has anyone tried this? Or any other Vitamins? I know there's lots you can do to help yourself whilest waiting for Doctors. But the recearch is Knackering!! And trying to rest up is very hard with a child. I feel so bed for not going for walks or to the park with her. I can't keep asking my mum as it's not fair and my husband works full time on strange shift patterns so no 2 weeks are the same. Any advice or help or just a hello would be very much appreciated. smile xxx

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0 likes, 12 replies

12 Replies

  • pixie22
    pixie22 aly74

    Posted

    I'm no expert, but I think at this stage (2-3 months after the infection) the doctor's might label it as "post viral fatigue". Not that that makes it any easier to cope with, but it does mean that there is some hope it will improve in a few months provided you can get enough rest (difficult I know!). I do know how you feel, when I first had CFS i had a 2year old and a 6 year old to care for. I used to stagger to school with the older one then to nursery with the younger, leaning on my walking stick, then stagger home and lie on the settee until it was time to do the same thing in reverse. Understanding of the condition was sketchy at that time (about 30 years ago), but things did improve over time. I still have CFS, but it has had good and bad phases during that time. I can only advise you to take all the help that's offered, and listen to what the doctors tell you. I wish you well, with luck your condition will clear up. Pixie xx
    • aly74
      aly74 pixie22

      Posted

      Hi Pixie. Thanks for your reply. I was told last month it was probably PVF....Like you mentioned. And i really hope it is. My doctor phoned me yesterday and said i had to wait for hospital appointment and rest when possable. I'll keep taking the vitamins and try not to over do it. My doc said it has gone on a long time but is confident i'll get better. She also said when i get to a hospital they will probably do the same tests she's done! Why!? What a waste of resorce. And the tests i would like to have from my own recearch are too specialist! She is a good doctor and i have seen her for years and get on well with her. Sounds like her hands are tied as i know she would help if she could. Aly
  • jackie00198
    jackie00198 aly74

    Posted

    Hi, Aly. So sorry you're having to deal with this illness--and from the symptoms you mention, it sounds very much like ME/CFS. If you've had bloodwork done and it's come back negative, and if you have all the symptoms of this illness, you probably have the illness. There is no direct test for ME/CFS, so I don't know what a test about mitochondria would reveal. I see a top specialist in the U.S., and I think he would have mentioned such a test to me if it were relevant to the illness. The most important thing you can do to improve your chances of getting better is to get lots of rest and pace yourself. If you do stuff outside of your energy envelope, like walking, your body will tell you because you'll feel ill and/or exhausted. Pushing yourself can make symptoms a lot worse and lessen your chances for a recovery. That's the lousy reality we live with. There's currently no treatment for ME/CFS. There's no magic pill. So learning to take it easy and to accept help from others, even if it doesn't seem fair to you, is key. There's lots of hope, because people can recover from this illness, even without treatment. 
    • aly74
      aly74 jackie00198

      Posted

      Hi Jackie. Thanks for your advice. I will take it all on board and keep taking the vitamins.If i have a busy day...i then heve 3 days of yuk. I feel a bit better today. but have rested well since Wednesday. Today is busy. So fingers crossed for tomorrow. Which i will make a rest day however i feel. As i'm learning if you don't rest...you know about it for days afterwards!. Aly
    • Tidsel
      Tidsel jackie00198

      Posted

      The mitochondria test I had done was part of pilot testing regarding ME. We were a group who had a tissue sample taken from a big musle, and the mitocondrie were then studied by and expert. Turned out that we - all of this group of 12 people - had varying degress of mitochondria damage. You can see it directly in a microscope.

      BTW we also all had damage in varying degress to our red blood cells.

      It is true that the only ease is rest and pacing, but I think many have found relief in changing their food. I sought out a clinic and changed by food, and it did not cure me, but I managed to get out of my bed and walk.

      Good luck with it.

    • aly74
      aly74 Tidsel

      Posted

      Hi Tidsel. Thank you for sharing that. I've just started reading a book with a lot of information in. I'm in the UK and a doctor in Wales has done a lot of studying on this. But even if I could afford her she's fully booked.

      She does talk about a gluten free diet. But I've not had the energy to read into it yet. But I will. Please can you tell me what you changed in your diet? I'm taking Vitamin B complex and Vitamin C with Zinc too. Many thanks for your reply. Aly.

  • wknight
    wknight aly74

    Posted

    As others have said there is no test and its a process of elimination and takes ages to get a diagnosis, especially if you go the NHS route. I went private but even once I got if, there is no magic cure for the condition.

    After years of suffering, I too am not good in the morning either, I am well on the road to recovery. How did I do it, simply by pacing and learning to say NO. 

    Its very,very hard. I am on my own and lost a few friends along the way who didn't understand. I don't care I am feeling so much better, but it has taken me 2 years, I can cycle 30 miles now, before I started I couldn;t even do two minutes, so there is hope, at least for me. 

    • aly74
      aly74 wknight

      Posted

      Hi. Thank you for your reply. Firstly...I am so glad you are feeling so much better smile

      As you may see from my other coments i just have to wait for the hospital appointment and rest when i can. I do feel a little better today after resting since Wednesday. Got a busy day today but not much walking. Which seems to trigger 3 days of yuk. So i will make tomorrow a rest day. As i have a 2 mile walk on Monday. Which i can't avoid. All the best. Aly

    • wknight
      wknight aly74

      Posted

      I hate to say t his but you will never get better if you don't learn to say No. Why do you have to walk 2 miles? Will you die if you don't do it? If the answer is no, they don't go, this is the mistake I made for many years to keep going. 

      Instead you need to learn How far you can walk with no ill effect. If that is 1 mile then you only walk 1 mile. They slowly increase it until you can walk 2 miles. You have to educate the body again

      saying no is the hardest thing to learn and enforce 

    • aly74
      aly74 wknight

      Posted

      Hi. I hear you loud and clear. My child is at school. My husband can take her but not pick her up so I have to go for her....but...my mum said she'd go if I'm not up to it. Unfortunately it's a 2 mile round trip. A few months ago this was no problem. Last week it put me back in bed. So I do have a get out in my mum. I could walk to mum's house and then she does the rest. That makes sense as rest is helping. Thanks for the kick up the bum to make me think about it 😊Aly
  • beth97678
    beth97678 aly74

    Posted

    Pleurisy takes some getting over.Sometimes antibiotics create their own problems.Neither regularly cause joints to ache or muscles to burn.You could have post-viral fatigue.It may not be long term, but you must pace yourself,or it will become so.Enlist your mums help for as long as you can.Take your vitamins and add vitaminD as well.Take 2 over- the- counter tablets every day.(everyone in the UK is deficient in this and it's very diicult to overdose)I'd also suggest eating live yoghurt  every day for the next couple of months to get your gut flora back in balance after the antibiotics.For a quick pick-me -up,you could try 1 gram of Vit C (the effervescent ones are nice).But the main thing is to rest as much as you can.Everybody here is suggesting that and that's beause it's SO important X
    • aly74
      aly74 beth97678

      Posted

      Hi Beth. Thank you for your advice. I did get mum to pick my child up yesterday....and today although srill shattered and have sore joints i don't feel i need to go to bed so that has helped smile

      I already eat live yoghurt. And my Vit D leveles were very good in my blood tests. About 77% I think. So I'm taking everyones advice and resting as much as possable and letting people help me out. Not easy to ask but I'm learning to do it as I know the out come if I don't . Many thanks for your advice smile Aly.

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