Diagnosed with ME/CFS could there be something else?

Brain and nerves
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Hi, I have been unwell since having a series of viruses last winter, resulting in fairly severe Post Viral Fatigue. I have since been diagnosed with ME. The fatigue seems to be only one of my issues so I'm wondering if anyone here can shed any light?

​ I seem to have all the classic symptoms, I fatigue easily, have twitching muscles, poor sleep, am sensitive to any stimulus whether it be caffeine, alcohol, vibrations, loud noises and bright or flashing lights.

​I cannot conduct any activity for longer than say 20 minutes without becoming disorientated or dizzy and can result in the shutters coming down and me grinding to a halt.

​Walking anywhere is a real problem because my legs become wobbly and I feel like I will collapse or pass out. Even standing still such as in a queue is awful as I feel faint and wobbly!

​I'm really at my wits end because apart from these symptoms, I have a constant ringing in my ears, have frequent migrane type headaches which can last for a couple of days, and I have been having frequent vertigo spells which make me feel very sick and shaky. My eyesight seems to be getting worse - don't know if all these things are connected.

​I know on the face of it my symptoms will match those of ME, but I am wondering if some of them could be worse because I'm developing anxiety? I've always had physical symptoms of stress, including vertigo and tinnitus, but I feel that these symptoms have steadily got worse over the months I've been at home. Could I possibly have Meniere's? Is there a link? I was told today by someone at the Fatigue Clinc that there are a lot of people with ME who also have Menere's.

​I have been off work for almost a year, and couldn't even manage 2 hours on a phased return without it wiping me out the next day. They are in the process of terminating my employment which I suppose is another thing to get stressed about.

​On the whole I'm a very positive person, I'm someone who can get things done, have always excelled in planning and execution of tasks and I just feel a shadow of my former self. This whole experience has knocked my confidence for six - I am in a new location with my husband so the only friends were acquaintances from work. The isolation is awful, I hate it!

​I do plan to go back to my doctor who has been very supportive in referring me for diagnosis, and I am in the middle of our local Fatigue Clinic 6 week course, although I have missed the last 2 weeks as been to unwell to travel there.

So what do you think? I'm very interested in your responses and experiences.

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Hi Tanya

​Most of your symptoms do sound like typical symptoms of M.E. I got  it after having glandular fever and lost my job through it. Having all these symptoms can make you anxious which makes you overbreathe which gives you more strange feelings like dizziness, palpitations, etc. It's a vicious circle!! I found CBT very helpful and learned to control my breathing as part of it. Regularly check your breathing by putting one hand on the top of your chest and one hand on your stomach area. Breathe in and out and notice which hand is moving the most. If your are anxious the hand at the top of the chest will be moving more than the one lower down. If you find yourself doing this try to slow your breath down so you are breathing into your stomach area and this hand is moving more.

​I find listening to guided relaxation tracks really helpful. They really help me switch off my mind from worries and help my body get proper rest. I always feel like I get a mini energy boost after doing one. You can buy CDs or download tracks from amazon and there are also loads on youtube. 'The Honest Guys - Hot Spa of Deep Relaxation' would be a good one to try to see if you like it - it's only 15 minutes long!I also learned remedial yoga which I find helpful although this might be too much for you at the moment. Pacing yourself and healthy diet can help too.

​The best book I've read on the condition is Fighting Fatigue by Sue Pemberton which gives you lots of helpful advice about ways to manage the illness and how to explain your illness to others.

​Hope you find something that helps!!!

Elaine

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Meant to also say make sure you are drinking enough fluids. Sometimes when you're exhausted it seems an effort to go and get a drink when you're thirsty. If you let yourself get dehydrated this can lead to headaches, dizziness and even more tiredness which is the last thing you need!!!

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Hi elaine, thank you for your response. I am practicing meditation techniques and these seem to be helping me in trying to sleep as I am prone to my mind running all over the place!

Regarding drinking enough, I am currently writing a fairly full diary each day which records how many drinks and what I'm drinking. I find if I drink too many cups of tea, my whole body will start quivering and twitching when I get into bed. The first time it happened I was quite alarmed, but I made the link with tea and so now I'm careful not to drink more than say 3 cups in a day to prevent this from happening. I now drink Camomile Tea, water, and juice as well as tea!

​The tinnitus and vertigo is still with me however and currently is the most disruptive problem as even simple tasks around the house are difficult. I hardly get out of the house because of this, and am missing out on my Fatigue Clinic appointments and anything else really. I'm not anxious about going out as managed a trip to visit my daughter and grandson at the weekend, a 2 hour car journey each way, and although I didn't feel at all well, I still managed to get there and back with hubby driving without too much drama.

​I guess just coming to terms with an illness such as this is the biggest challenge, as those we live with also have to adjust to someone who previously did everything into essentially a carer. My husband has been brilliant but the frustration sometimes comes through!

Thanks again for your reply

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Hi Tanya

​I have a friend who also has M.E. and she suffers from tinnitis and vertigo. When she goes out she uses a walking stick to help her balance and give her a bit security. I also sometimes use a walking stick when on out really bad days. I'd rather use a stick and get out than be stuck in the house!!. You could possibly try this. She's also recently resorted to getting a walking frame with a seat which she uses on really bad days when she's in the house on her own. You could also consider this and don't worry what people would think - no-one would really see you using it anyway!! She's seen her doctor lots of times about the vertigo and tinnitus but they have never been able to suggest much to help.

​I think with all the strange symptoms of this illness a lot of the time you just have to try things yourself and see what works for you. Well done for having a trip out. It's important to have things to look forward to (even if you feel exhausted afterwards!). I find keeping a diary very helpful. I keep a rough note of what I've done in a day so if I relapse I can look back to see what I've done that's made me worse to try and avoid it again in the future. I also try and write down something positive about my day (even on a bad day!).

​By pacing yourself and finding things that help you it's still possible to lead a happy life with this illness - it's just a different life from before but that doesn't have to be a bad thing.

Good luck

Elaine

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Thanks for your response Elaine, I do have a fold up stool which I take out with me, when I feel up to walking the dogs around a field. I have had some really strange looks from people, and sometimes have felt angry that they should judge me as they have no idea of my situaton, but needs must! There is nothing worse than feeling wobbly and sick if youhave nothing to sit on.

​I like the idea of a walking frame with a seat, I will give this some consideration. What I haven't mentioned is that I now have a mobility scooter to help me get out wth the dogs, but haven't used it much as the vibrations from the pavements seem to make my symptoms worse!!

​I've had a bad couple of weeks with the dizziness and headaches, and Monday felt wonderful for the first time in weeks, of course I did too much and paid for it yesterday. Must learn to stop overdoing it when I have a good day!!!

​HAve been to the Dr to discuss about anxiety and depression and although I am on the scale, she does not want to medicate at the moment and has instead referred me for CBT therapy.

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Hi Tayna

​It's great you had a good day - you must have been doing something right so don't give up hope! I've been on antibiotics for mouth infection after dental work and they affected my balance so was having to use my walking stick. One thing I remembered while feeling dizzy was something a yoga teacher told me which is if you are walking or standing and feel wobbly on your feet you should stare straight ahead at something in the distance and keep your eyes focused on the same spot. For some reason it seems to ground you and stop you feeling quite so bad. I tried this when I was out walking by staring at things like a lamp post in the distance and concentrating on walking towards it and it seemed to help. Might be worth a try!

​Don't worry about what people think of you when you're out - just be proud of yourself any time you manage to go - at least you're making the effort. I hope you find the CBT helpful!!

​Elaine