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My doctor is referring me to my local CFS/M.E.Team for diagnosis

Posted , 4 users are following.

SaltyLura
SaltyLura

I'm still not entirely convinced it is CFS as my T4 and T3 levels are both on the lower side of normal, but my symptoms do match up with CFS as well as hypothyroidism so I'm hoping I get a diagnosis one way or another.

I think my trigger if it is CFS was back surgery I had in November last year to fix a slipped disc. It was a very tough year trying to get doctors to take me seriously and it took almost a year from my disc bulging to actually being seen by a consultant in a private hospital (the NHS paid for it) who said I needed surgery ASAP as the disc had also herniated.

A rough rundown of my symptoms I'm currently getting:

Chronic Fatigue

Severe night sweats

Dizziness

Headache

Bloating

Constipation

Nausea which gets worse the more tired I am

Napping in the afternoons

Soles of my feet are aching/burning

Stomach pain

Rib pain

Waking up in the night and not being able to get back to sleep easily

Muscle ache in arms/joint pain in knees

Forgetting words in the middle of sentences/unable to think of the word I'm truing to say

Brain fog

Intolerant to loud noise when very tired

Sensitive to cold and my hands/feet are always very cold

Sore throat/lump in my throat

I get these symptoms the majority of the time and they vary in degree of how bad they are. I've had to take time off work and I've started a diary of symptoms to take to the Team when my referral goes through. I'm so glad I've found an active forum I can be part of as it is useful to see other people's experiences and be able to talk about mine with other people who understand.

0 likes, 8 replies

8 Replies

  • bob1970
    bob1970 SaltyLura

    Posted

    Your symptoms match but as I am sure you are aware, they match with so many other illnesses as well. 😃

    Can't see it mentioned so apologies if you did but PEM or Post Exertional Malaise has normally been a key symptom in ME/CFS. Not sure if it still is but I would do some research on that and see if it fits.

    • SaltyLura
      SaltyLura bob1970

      Posted

      Oh yes I forgot to add that in, I walked for a couple of hours on Sunday and yesterday and today my fatigue is a lot worse than it was on Sunday. I've had other times where I've been shopping for an hour or so and then needed a 2 hour nap in the evening and slept for 11 hours following the nap, still tired the following day.

    • bob1970
      bob1970 SaltyLura

      Posted

      If that is the case then it could well be.

      I would start resting more. If you are able to walk for 2 hours I would say that your ME is mild currently (not downplaying it but just in comparison to myself). If you keep physically or mentally pushing your body then it will get worse.

      The best advice I got was to rest, rest, rest. Not always practical but just be kind to yourself and don't push.

    • SaltyLura
      SaltyLura bob1970

      Posted

      No that's fine I'm aware it's mild compared to a lot of people. It's quite hard for me to rest as I'm a single parent to a 5 year old but I will try as much as I can. Thank you for your replies 😃

  • artistmike
    artistmike SaltyLura

    Posted

    I agree with Bob1970, with those symptoms, the chance of you having CFS/ME might be high even if it's a little mild so it is very, very important that you don't currently try to push yourself and rest as much as possible.

    Always try to live your days so that by then end of them you still have some energy in the bank, thus avoiding the 'boom and bust' scenario that is so common with ME/CFS and which inevitably makes the whole thing worse.

    • SaltyLura
      SaltyLura artistmike

      Posted

      I will definitely try! I'm a single parent to a 5 year old though so it's quite difficult to rest but I am going to try.

  • GraySeal
    GraySeal SaltyLura

    Posted

    I have many symptoms of mild/moderate ME/CFS. my t3 and t4 were on low side of normal. TSH tiny bit high. They tried me on thyroid pill just to rule out hypothyroidism. The side effects (esp. palpitations) were awful and I felt worse, even at very low dose. Since theres no test for CFS, they have to rule out other causes. it takes so long! i have tried many things. only consistent help seems to be from good sleep (9 hours), eating healthy, meditation, and lots of resting. I wish you well. take good care.

    • SaltyLura
      SaltyLura GraySeal

      Posted

      My TSH is on the low side as well as my T4 and T3 which is just even stranger! I'll be working with the team to work out the best course of action for me as well, I'm sleeping 10+ hours a night at the moment as well as sleeping in the afternoon where I can so sleep doesn't seem to be the thing to work for me! Thank you for your reply 😃

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