Hi everyone.
I've just joined - apologies if thi shas been discussed elsewhere but I hope I can get some information from other sufferers.
I was told I had post viral fatigue in 1997 - in 2004 I was diagosed with Chronic Fatigue Syndrome. I had to give up on my career but made a new one, working part-time hours. I've been lucky enough to scrape by.
ThisJanuary however, I started to get symptos new to me. Walking and veering to the one side, tingling in my hands and feet and numbness too. Also a terrible stiffness that affects my walking and my ability to pick things up. The worst new thing is terrible problems swallowing.
I had to give up work completely - I just couldn't do it and I am back to sleeping 14 hours a day.
My GP sent me to a neurologist. After a 13 week wait in pain and discomfort I finally saw neuro 2 days ago.
Her attitude really pissed off. Chronic Fatigue was talked about the whole time. I couldnt feel pin pricks on my face, feet or hand. I had a positive reaction to the Babinski sign (I know about it as I have a friend who is a GP). She told me, it's not MS, it's CFS.
BUT, I am being sent for an MRI, to see a speech therapist for the swallowing problems, a physiotherapist for the stiff legs, a psychologist for my memory problems and I am being put on pregabalin painkillers. (The NHS is great once you are in the system).
What I would like to ask, after years of CFS, I didn't think numbness and tingling were part of CFS symptoms.
How many of you have these types of symptoms?
Apologies for the long first post!
David B
I had CFS for 19 years with no numbness and tingling.. then out of the blue last year after the worst relapse ever it started, but also got chronic nerve pain in my skin and mucus membranes too. My hands feet and face are very affected with the symptoms.. I also get numbness to my entire digestive tract including lips and anus.. Which is supper weird.. haha. I also have all the other problems you have listed.. Terrible memory etc.. The throat thing sound more like stress to me.. when you are stressed and anxious your throat and neck muscles tighten and this can give the sensation of not being able to swallow.. its very common with people who suffer from anxiety, and by the sound of it the latest bout has made you supper stressed and anxious. A brain scan is good to rule out MS, mainly for your own peace of mind .. but i would say your just having a bad relapse of the CFS. From mine and others experiences on here, over time, there is a change in symptoms and you can get new ones that seem to come from know where also. It’s taken mine 12months to subside enough to start to function again, though the hands and feet and face can still be big issues.
sorry you're feeling so rubbish! I have tingling in my hands and feet sometimes. I would get tested for lupus and sjogens (not sure if thats spelt right sorry) if i was you just to rule them out?
Thanks for the reply littleme.
I am really not stressed.
I actually have a patch of pain where it hurts when food passes but even water sticks, then it comes gurgling back up - it is very painful.
I didnt know numbness and tingling was a part of CFS.
To be honest , I hate the phrase CFS. What it means to me is "We don't know" because SOMETHING is causing this stuff, it's there for a reason, not "just because".
Driving me nuts at the moment :-(
Thanks Peachy.
I have been told before that it is not Lupus - I've not heard of the other one.
I am waiting on tests for B12 deficiency too.
i watched this the other day
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David B.
I had almost the same exact experience as you. i'd had CFS for several years, when I started having numbness and tingling in my extremities. I also have a feeling of heaviness in my legs. After getting informed, and in large part thanks to this forum, I realize that these are symptoms of my CFS. By the way, I did have a nerve conduction test that came back negative. Apparently, nerve issues, or nerve "pain," in not that uncommon with CFS. Your NHS brochure mentions "nerve pain" as being a symptom of CFS. I'm waiting to see a CFS specialist. I decided not to go to a neurologist, because I feel that if any specialist isn't familiar with CFS, they're going to go off in a lot of inappropriate directions. For instance, the neurologist who did my nerve conduction test was focused on back problems as the cause of my symptoms, and wanted to do further testing. NO! I've had back problems, and know the difference between those symptoms and my new symptoms. I'm not sure about the symptom you have of difficulty in swallowing. When I did a Google search, I did get some "hits" as this being a possible problem with CFS.
Hi David ,I've had CFS/ me and myasthenia gravis for almost 8 years,I also had to give up work and re trained ,I started doing 1 morning a week that's all I can manage at the moment 
.Ive also started with these new symptoms...numbness,tingling,burning sensations,my memory is really poor ,balance is terrible,I've been back to the neurologist and waiting for results of MRI .
i was convinced I had MS but reading this forum it seems that just as you think you know illness it throws a whole few more problems in for good measure! As if were not putting up with enough!! I too sleep for days n days....I think it's a good idea to get checked out,but there seems to be a few people on here the same as us...good luck x
Thanks Jacki - in a weird way it is good to know that others have these problems, if you know what I mean. It just feels so real and it feels as if we are being dicounted sometimes by the term CFS
Hi Lisa, sorry to hear that you are so bad. It is good for me to hear that tingling and numbness is a CFS symptom though - I did not know that.
I guess I just have to keep trying to get on with it!
David B.: I think a lot of us hate the term Chronic Fatigue Syndrome (CFS). It makes us sound like we're lying on a lounge eating bonbons (to me, at least). That's why the CFIDS Association in the U.S. now calls it CFS/ME (myalgic encephalomyelitis). In the U.S., in the past, it was called "the yuppie flue," which is really demeaning. From the many posts I've read over the years--yes, CFS is a diagnosis of exclusion. But, it seems to be a theme and variations. I see the same symptoms experienced and written about, over and over. One person, of course, doesn't have all the symptoms, but a subset. I agree with a theory of this illness that I read about once. That it attacks the brain and central nervous system, and the presenting symptoms depend on what part of the brain it attacks. Please keep posting. I'm very interested in what your doctors prescribe for the tingling and numbness. Especially since I don't get to see my doctor until late October.
Whoops, David! In my last post, make that "the Yuppie flu," not flue! Just another symptom of my malfunctioning brain.
ask all the long term sufferers and they will say the same.. each time we have a relapse with new symptoms we second guess our diagnosis.. theres a period of denial.. then sheer horror as you realise you have a whole new range of stuff to deal with. But given enough time you do eventually get your head around it. I was in such a state with myslef this time last year... truly i could never see myself living any type of normal life again, leaving the house to walk the dog for 5 mins was such hardwork let alone trying to run a home , work etc.... but you do get there.. never quite the same as you where.. but you adjust. 
Littleme: I always like reading your posts. They help me not feel so alone, with all these weird symptoms.
Thank you Jackie [Description: cheesygrin] ... the forums have been a great help to me too.. there is so much weirdness thats goes with this condition that finding others with the same issues does bring some comfort . At least we then dont fell like we are totally nuts [Description: evil] ... no one understands just how hard it is to live with day in day out, some days you go to bed feeling not so bad, only to wake the next day feeling like you’ve been hit by a truck and backed over for good measure. It bothers me on some forums how they all gang together to just feel sorry for themselves, dont get me wrong we are all entitled to a bit of self-pity... but long term it solves nothing and robs away what little bit of joy thats left in life. I dont want to be that person... i hate what this condition has done to me and the years it has robbed me of, mostly how much i missed out on while my children were growing up. So i refuse to waste another second of what’s left. It’s a hard road to travel.. but i have to say it makes it much easier to know im not travelling it alone [Description: cheesygrin] .. and places like these are the difference between having hope and falling into that pit of despair
Littleme,
I seem to be noticing a trend here: longer term people with CFS/ME developing nerve issues, like tingling and numbness. I can't believe my specialist seemed surprised at these symptoms. Even the NHS brochure mentions nerve pain. I'm getting more information here than I've gotten from my doctor.
Your right there does seem to be a progression of symptoms. But it does not happen to everyone, a lot just seem to get the tingling or as some describe tight burning sensation rather than the pain. My mum was diagnosed with ME almost 20 years ago after a bout of glandular fever and so far has had any nerve pain issues. She was very surprised by my problems and how severe they were. But my own doctor picked up on it straight away, even though he admitted he does not diagnose many cases as severe as mine had turned into. I guess its just luck of the draw. If i think back i have had the tightness and burning and tingling for many years but just put it down to circulation issues, it only became a problem when the burning turned into full on pain, so much so that even holding a knife and fork to eat was a struggle some days, washing my face felt like some having my skin rubbed off, it was that sore. I could not wear make up for 3 months as even the soft makeup brush felt like rough sand paper on my skin Its most definitely a neurological condition with immune system influences and is infact classed as that now here in the UK. It took alot of time and searching to find any reference to nerve problems with the ME here on the internet and i tried another 3 forums, all seemed to think i had fybro as they had not heard of the nerve issues. But clearly when you read deeper they are explaining the symptoms differently which is why its been put down to circulation problems, makes no wonder the doctors are confused when the patients find it hard to put into words what they are experiencing ..
Jackie, the first thing I have been prescribed is Pregabalin. I was put on Gabapenting 4 years ago and I had to come off ot because it affected my memory so badly. I am willing to try this though as the pain in my legs is just too much at the moment.
Don't worry - Have you seen my typo's and bad spellings? I am so fed - up with my fingers not working that I don't even bother correcting any more!