Really struggling and feeling very alone - what should I do? :(

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Hi everyone,

Apologies for the length of this ramble, I'm just feeling very confused alone and fearful. I would like to know if anyone gets these symptoms and how they got diagnosed? Because all Dr's say it's stress/anxiety related.

four years ago I took a legal high and had a terrible experience on it. A couple weeks later I had a full blown migraine with aura (intense pins & needles down one side of my body with numbness - no weakness or anything). So basically since then, I've been getting weird left sided symptoms like buzzing, tingling, tiredness, creepy-crawly feelings, feeling like my mouth on the left side is drooping and drooling - but then when I look in the mirror its not. And it feels like I have slight loss of sensation, very slight. I get this on the left side of my face, neck, left hand and sole of my left foot. I get brain fog, depersonalisation, really bad anxiety and this all makes me quite low. I get periods where I feel very tired and nauseas too. These symptoms come and go, sometimes when they come they last for months, sometimes days. They can wax and wane throughout the day and are usually worse if I have no sleep and in the mornings and evenings (afternoons are usually okay). They can get worse when I'm really stressed and anxious, and worse when I focus on them too. Sometimes they go during the day and I'm only left with a slight buzzing in the left foot.

I've had an MRI and saw a nuerologist to rule out MS (I'm a MAJOR hypochondriac and am TERRIFIED of MS - so part of me thinks my symptoms are psychosomatic or fuctional neurological symptoms that are mirroring MS, as I'm sure they appeared and worsened when I focused on them.) please don't mention MS - unless it's to reassure me that I DON'T have it haha. >.<

I have hypothyroidism too. I've seen around 7 different Dr's and they ALL say it's stress related.

But I've been looking a lot on CFS forums and I've seen a lot of people talking about sensory tingling sensations and some people even mentioning them being one sided.

So basically I would like to know if anyone else experiences these symptoms? If you have heard of these being CFS please let me know! I have a Dr's appointment next week so I'd like to mention this to him!

Huge thankyou to anyone who replies!

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6 Replies

  • Posted

    Hey lovely!

    I suffer from CFS and haven't heard of some of these symptoms apart from the brain fog. I haven't personally experienced the the symptoms you've mentioned above but with CFS every case is different. I think it may be worth mentioning it to the doctor and maybe asking for blood tests to rule some stuff out!

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  • Posted

    Hi. I really feel for you and can also relate to you. This time last year I was 3 stone lighter (lost weight quickly) and had lots of strange symptoms. I was convinced I had MS. I had tingling in arms and legs, weird vision (floaters etc), weakness in arms and legs, pain everywhere, hot sweats in the night, couldn't sleep well (I would wake up every couple of hours with my shoulders buzzing) pins and needles, brain fog, flu symptoms and major anxiety. No dr ever sent me for a brain MRI and said I definitely did not present as someone with MS. I had many tests for rheumatoid arthritis, thyroid problems, hormones, diabetes and regular full blood counts. I was also put on fluoxetine to which I had a bad reaction so got taken off them! Final diagnosis: post viral/CFS! I had been in hospital with pneumonia a month or so before it all started and I was told it had all come from that! Have you suffered any kind of illness bacterial or viral infection before these symptoms started? A year on and I'm so much better but not back to normal. My legs tingle alot although I do have back issues. I also still get shaky and anxious at times. I drove myself crazy thinking I had MS and was at the Drs or even A and E all the time! Please try not to drive yourself mad thinking of MS. I know how hard it is. Please let me know how you get on and although I can't diagnose you, I totally understand what your going through. Take care, big hugs, Faye xxx

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  • Posted

    Hi, I have had CFS/Fibro since I was around 16 only diagnosed about 6 yrs ago, I get terrible pins and needles and also facial paralysis, hand tremors and pinched nerves. I was told most of this was down to muscle weakness obviously due to the lack of exercise. I hope you get some answers
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  • Posted

    Yes, I have tingling sensations on my feet and calves and other nerve-related symotoms, like burning and heaviness in my legs. But you can't just pluck out one ME/CFS symptom and then think you might have the illness. People with this illness have a constellation of symptoms, which together, point to ME/CFS. These typicially include extreme fatigue (not just a normal tiredness that many people feel), unrefreshing sleep, and many other symptoms. Check the "solve me/cfs initiative" website. Also, I don't know what you mean when you say you "took a legal high." You smoked some pot? Left-sided symptoms don't say to me ME/CFS. You need to see a GP, someone who can look at your symptoms as a whole rather than piecemeal. But then again, you do mention having seen seven doctors, so I'm really not sure what's going on here. A GP can do bloodwork and refer you to a specialist. It does sound like you have something going on, though. It's hard to believe that all of these symptoms are stress related. 

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  • Posted

    Heather, so sorry to hear that you are suffering so much. Please have a good read about Vitamin B 12 deficiency. This sounds very relevant to you. Am going through this myself. Good luck.
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