EDMESH

1,938 members • 345 posts

Possible CFS

Hi all,

I'm a 37 yr old and was an active woman. I have been suffering with tiredness/exhaustion on and off for the last 6-10mths. Also had numbness in my left side of my body. Plus my muscles ache. Was rushed to hospital had mri and lumber puncture. Mari showed 2 leasions which the hospital called non specific. Now my right side is effectively the same as my left. I also have pins and needles. Went to see my gp who when I asked about m.e said we cannot rule out CFS. The slightest thing cause me to be drained.

So I don't know where to go now as what does a statement like that mean 'cannot rule it out'

Sorry for the vageness. Don't know which way to turn 😢😢😢😢

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Welshiegirl

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13 Replies

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Hi there. Sorry to hear of your problems. Basically your doctor means exactly what he says. There is no definitive test for ME/CFS so it's a conclusion that's reached when all other tests come back "normal". Your doctor could test for thyroid function, anaemia and other things before reaching a diagnosis and you may need to see a rheumatologist and/or a neurologist, especially as you are having problems with numbness which must be very worrying for you. Try to go with the flow and rest as much as you can while it all gets looked into.

All the best x

Hello. I wonder where you are living? With the name Welshiegirl you are possibly in Wales? I'm in Cardiff but anywhere is Wales it would be good to hear from you. There are some Support Groups around Wales where you could get help and your local AM would be helpful to get some help, maybe...

We are giving a presentation on ME at the Welsh Assembly on July 13, 12.30 to 1.30 by invitation from Julie Morgan AM.

But if you are in North Wales then Mark Isherwood AM is a great person to contact to ask for advice.

But just let me know whereabouts you are if in Wales, especially. You could message me privately on here if you like.

Hi M

I'm based right in the middle in mid Wales.

Thanks all for replying. Drisnow doing further blood tests as he said it's too early to say if it is Cfs.

I'm just finding it difficult accepting how my body has changed. He has now given me ampertripalibe for my spasms.

Hi there. There's a possibility we could come and visit you to help you but not until later in July or Aug, as I'm away for 2 weeks and the we have the Assembly presentation on ME. We want to send letters out to all the AMs to attend the lunchtime meeting. Who is your AM in the Assembly? May I email you a invitation for you to post to your AM? Which general area do you live in if you're not sure who you AM is? You could message me privately on here or write to me by email, even better. I'll send you my email on the messaging system on here. OK? You can look us up on FB as MESiG ME support in Glamorgan (but we help people far beyond that, around Wales and in England too).

Miriam

Has anyone had a friend or family member say to them oh come on all you need to do is shake yourself out of it. Do some running or something.

Do folk think I like feeling like this????

Feel useless and helpless

Yep I've had that.

I've been working through this thing myself for over 3-years and have many of as same symptoms you. In addition I have pronounced difficultly walking and use a rolavator / walking frame as well as a wheelchair.

In the early days family and friends kept saying 'it'll get better' and even complete strangers think that they are entitled to tell me about an aqaintaince who made a full recovery in 6-months or worse, that they know someone who has MS and that I should be really grateful (and stop winging) as I don't have that. I've also been accused of having a self-inflicted or physosomatic illness. It's insulting and it's hurtful. However you do eventually tune it out and cease to care that the person with MS is heroically skipping past - ultimately, illness is not and should not ever be a competition and everyone who thinks that they could cope better in your shoes has probably never had a true challenge.

My life has got better, my illness is still there. I'm better at managing the fatigue and have a routine and many practical ways of getting around - it's worth sorting the 'structural stuff' like adaptions in the work place, blue badge etc. even buying food shopping on line and any state assistance.

Focus on what you can do - I can't walk unaided but I can door indoor climbing and can swim. With the fatigue under control I can participate at work despite physical challenges.

Thank you,

I'm having more blood tests tomorrow. I've more holes than an bloody pin cushion.

I just want some answers but I can't see them coming anytime soon

Hi, I'm back from North Wales now. Husband was not well while there. Hope you are going on ok. It is sometimes difficult to get a diagnosis. One friend has waited 5 years as her GP didn't believe in ME and now she's at a new Practice but they have still not given her a diagnosis. Working on it, as she is not getting Benefits without a diagnosis. Miriam

Ive had bloods done. All clear expect for bone profile.

Seeing my gp next week. In the mean time work want to do a review of my sickness.

Hope your husband is better soon

Hi. Husband trying to improve a bit but still coughing a great deal. Are you still able to work? Or off work?

Im currently still off work. As im now suffering with speech and brain fog. My job is quite stressful plus beinging in charge of other people and medication. Xzz

Aww thank you so much.

EDMESH

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