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At my wits end

Hi

Was wondering can anyone advise on next steps. I am 35 years of age and i had glandular fever when i was 18. Since then i have experienced pains in my legs when i am tired. Recently the pains have been getting worse along with other symptons of severe fatigue…i get as far as the afternoon and find it hard to keep going. On my days off i normally have to go back to bed for a hour or two. In addition to this i have started getting really bad tingling in my hands and sometimes feet and severe dizzyness. I become very unfocused on everything round me. Also i get a sharp pain in my chest which goes down my right arm and makes it difficult to move. I have been to the doctor who says i probably have fibromaylagia. I am not fully convinced as i am not in constant pain. can anyone shed any light on my symptons. your thoughts are welcome

Hi Ede,

I am afraid this is impossible to answer, without you going for further tests. I don’t know terribly much about fibro’, but I know it can have pretty similar symptoms to MS - but so can 100+ other things!

I think, though, a couple of questions to go back to your doctor with:

  • Why does he/she think you “probably” have fibromyalgia? Can you be referred for further investigation to confirm or rule this out?
  • Assuming it WAS fibromyalgia, is there any treatment, or are they just going to do nothing? This doesn’t seem right…

I don’t really understand why you’ve been told it’s “probably” fibro, but seemingly with no plan for any next steps. I think you need better than “probably”, and to press for a firm diagnosis, or, if thats not possible, an investigation of what else it might be.

Some of these things can be very hard to get to the bottom of, and it’s not always even clear, at first, which discipline you need to see (e.g. Neurology or Rheumatology).

But I think you certainly deserve a better answer than “probably”, and just being left to get on with it. Incidentally, some symptoms can still be treated, whether or not you have a diagnosis, so worth asking about that too.

Definitely another trip to the doctor’s, I’m afraid, and if you’re not happy with this doctor, try a different one. None of them will be able to diagnose you on the spot, whether it’s fibro’, MS, or just a simple vitamin deficiency - inevitably, you will need further tests, and they still might not yield obvious answers.

But nobody can tell you what it is on an internet forum, I’m afraid. It’s going to be down to you to push it with the doctor - or switch doctors.

Tina

Hi Ede, I can only totally agree with Tina.

‘Probably’ is certainly NOT good enough. Go back to the doctor and say you want tests… if you find the doctor intimidating try and see another doctor in the practice, or as Tina says switch doctors… or take someone with you who can fight your corner and say how difficult the symptoms are for you.

Good luck,

Pat x

Hello and welcome :slight_smile:

I wouldn’t worry too much about the glandular fever thing - most people who get it don’t go on to get MS.

However, I agree with Tina and Pat that it doesn’t sound like your symptoms are being taken very seriously by your GP. They don’t sound like MS to me, but they could be any number of things and only a proper investigation is going to determine which it is. If I were you, I would start with cardiology - that chest & arm pain doesn’t sound good and circulation problems can cause tingling in the extremities I think. It’s probably got nothing to do with your heart, but I’d feel much better knowing it wasn’t if I were you.

Karen x

Hi ede77 I have gone through the same as you. In my early 20’s I had glandular fever , since then I have had strange pains in hands and bouts of tiredness that have never been explained . Over two years ago had pins and needles and numb left foot . No explanation to those symptoms. The numb foot remained off and on since . Since september last, I have been unable to work , due to tiredness and pain and neurological symptoms. The GP thinks I have CFS , although he has since said that I might have MS having had a letter from the neuro . But still waiting for a proper dx . Have MRI scans next week, so there might be light st the end of the tunnel . The worst part of limbo land is you know something is wrong but it takes so long to get to the bottom of everything . All the best Pete

More developments. I have been in hospital for a week with upper colon constipation. I am now on stuff to mAke me go as I can’t go myself. In relation to the thread about referraal to rhematology I already have been and don’t have arthritis so that has been ruled out. I am dubious about going back to doctors as I seem to be running constantly compalining. I really don’t know were to turn too next.

I’m afraid the only way you are going to get any answers is to persevere with your GP or to start again with a new GP. There are no other options. I hope the meds work and you’re feeling better soon. Kx