View Full Version : M.S.. M.E.. Something!??
I feel dreadful! Its pretty hot here (UK) atm and I'd forgotten just how much of a struggle it is in the heat.. It feels like Im wading through treacle.
Ive been close to passing out on several occasions.
I can't think straight, can't find the right words.. people ask me questions and half the time Im just staring at them trying to decipher what it is theyre asking.
Im SO tired all the time.
My arms and legs ache, deep down, like in the bones or something.
No matter how much rest I get I still feel exhausted.
No appetite. When I do eat it feels like a lump in my belly and I feel sick.
I can't sleep properly, I wake up feeling worse..
I just feel extremely tired and each and every day, every minute feels like such a struggle..
My hands shake a little.
I feel incredibly weak, I even have a little old lady chair to sit and shower! Im 32, not 92! I can't hold a plate of food in one hand without feeling like my wrist will give way.
Im clumsy, always bumping into things.
Always seeing things out the corner of my eye (possibly anxiety more than anything else?)
Palpitations (mostly near my period)
Headaches are becoming more frequent (Those too are worse near my period, although they come at any time).
My joints, mainly arms, keep locking into position where I know if I were to stretch them out I know it would hurt.. then sometimes Im stuck, where I have no option but to carry on, not adjusting the movement/position and it clicks and hurts.. this happens several times, mostly back, legs or arms.
I get sore throats and a run down feeling a week before every period, but sore throats can come just after it too.
Fatigue is almost debilitating.
I sit and play solitare on the PC and my head will just drop, I dont think Ive nodded to sleep, I think my neck just gives way.
Muscle twitches... None of this looks, nor feels very promising to me. If anyone on her has MS, does this sound like it to you?
I feel the worst Ive ever felt.. But apparently, everything, bar low blood levels (not quite anemic), everything is fine, Im not even vitamin deficient (Which I also find hard to believe). But I feel far, far from fine.
im thinking of asking for my medical records. How far back should I go, has anyone else ever asked for copies?
This has been an ongoing problem, mainly digestive - which is where the attention always is, and is what I have an appointment for in a few months.. But Im 99% sure Ive got MS or something horrible, I can't possibly be OK. I feel so bad, have so little of a life.. no job, cant go out because Im exhausted after 5 mins.. I just wish life would be over, yet I know if I felt remotely healthy I wouldnt feel this way.. And no, Im not depressed.. I just feel close to death, or collapse at the very least! Im miserable :weep:
nomorepanic
24-05-12, 21:12
Wow you have a lot going on - sorry to read this.
What have the docs said about it all and have they done any tests to reassure you?
Hi Nikki,
God... that honestly sounds like something I could have written, especially a couple of years ago. I've had all of those symptoms - a lot of the time at the same time, but not always. They seem to have got less severe recently but honestly, what you wrote described my daily life not long ago.
I personally think it sounds like you have M.E., although I'm not a doctor, I just have it myself. I've been ill for about 6 years now. I've got a few other things going on with me as well... firstly there's hypermobility syndrome (HMS) which it turns out quite a lot of people with M.E. have. It's where your joints are too bendy which is due to extra collagen elasticity or something and quite often it can cause nervous system problems (though don't ask me how it works physiologically lol). Another thing I've been diagnosed with is Fibromyalgia, but the symptoms are so hard to distinguish between that and M.E., they are basically the same. I just tend to say I have M.E..
Lastly, I've been diagnosed with something called POTS (Postural Orthostatic Tachycardia Syndrome). Low blood levels are often a tell-tale sign of this I believe. POTS basically means your heart rate gets very fast on exertion/ movement and you have orthostatic intolerance, so when you stand up you will normally feel like you're going to black out, etc. I'm not sure if I'm doing a good job of explaining this but the Wikipedia page on POTS is excellent.
I also get very, very confused as a result of these illnesses (does "brain fog" ring a bell?). It's affected me in every way - physically, mentally and cognitively (my ability to think, communicate, express myself, etc). It's so debilitating.
One website I've found really useful is:
http://www.neurosymptoms.org/ - this is great because it gives you context for your symptoms and helps you understand what they're due to (you don't always know the cause but you understand how they work/ which systems they've come from). It shows you that some neurological symptoms can be "benign" (for want of a better word) - i.e. there doesn't always have to be something horribly sinister going on like M.S., it can just be that some connections in your brain aren't quite firing properly or something and it can be a minor physiological issue which wouldn't show up on scans etc, but obviously it does massively affect your life.
Because no one knows what causes M.E. or what it even is exactly, I can't really offer more help than that. :( I have met a lot of people with it over the years and I've met/ seen/ heard of a lot of people getting better through completely different things. And I also think that different things can cause M.E. - for instance, in some people I know it seemed to have been triggered by major viruses like meningitis - in others (as with me), I think long-term stress and a traumatic past combined with a low immune system and lots of infections probably triggered mine. So it's all about trying to find a way of treating/ managing it that suits you.
As I said before, things seem to have improved recently which I think is because I'm no longer at uni. I finished uni last year and have literally been doing nothing with myself ever since to try and rest and recooperate in the hope that it helps. Uni was a constant source of acute stress and I was just overloading myself when I was already weak. Having had a break things are a bit better. I'm still very far from being well though and I'm not sure how to get better!
Btw, random question - I know you say you're not depressed but have you ever taken anti-depressants? Because I think ADs can have this sort of effect on people as well if taken long-term.
If you want to talk any more please do feel free to PM me... I've heard pretty much everything about this kind of stuff over the years xxx
If your Dr thought you had MS he would have first done some tests on your reflexes .Then sent you for Tests /Scans .A lot of your symptoms could be Anxiety related, and these often have a knock on effect . .M.E..is hard to diagnose but id speak again to your Gp about this .It does seem a possibility ,from the information you've given here .Has your Dr mentioned this to you or has it been ruled out already ? If you arent eating enough you will be weak, and have low energy levels. Maybe a glass of Complan mikshake each day will help you whilst your appetite is low ;It contains plenty of nourishing vits and minerals ,Also not enough exercise will affect your muscles and surrounding tissue These affect your bones and joints .This wont help with the feelings of pain and fatigue .Stress does seem to be a large part of your life , and this itself can make you feel very unwell if it goes on for too long . Id definatley ask the Dr about ruling out ME ,All this worry isnt helping you .one bit Good luck and .t/C Sue :hugs:
Hi, it sounds like you've seen your doctor & they've done tests but I read through your list of problems & they all sound pretty familiar. It goes without saying that you need to get everything checked out if you haven't already but afew years ago I went through what I would now call nervous exhaustion after a number of stressful events & I can honestly say that I never felt so ill in my life. I just could not believe that anxiety & fear could make me feel so physically ill, but it can. My arms & legs used to feel like lead.
I won't rewrite it all here but if you look at my posts going back to 2006 - 2009 you might find something that helps you to understand what's going on & how to get well again.
My doctors kept telling me I was depressed & should take anti-depressants but I knew I was only low because of how I felt & how it limited my activities, I knew that if I felt well again I would be fine. So I changed doctors & she agreed with me that it was CFS. However, she couldn't offer me any support so I saw a therapist & did the Lightning Process course & gradually got better & returned to work & a normal social life.
If it is just anxiety / stress then I think you're just in a vicious cycle of fear / adrenaline / exhaustion but I'm not diagnosing you, just telling you about my experience.
Try not to worry-it really doesn't sound like MS to me, but only a doctor can give you the reassurance you need.
Take care
Seffie x
Oh, having read the others' posts on here it's reminded me to tell you that CFS/ M.E. is a diagnosis of exclusion, so you get tested for other things it could be first and then if they can't find anything they will usually diagnose M.E. (although some call it Chronic Fatigue Syndrome).
However, she couldn't offer me any support so I saw a therapist & did the Lightning Process course & gradually got better & returned to work & a normal social life.
Seffie, I see you did the Lightning Process course. I was wondering about doing it but not sure about it. It's incredibly expensive to try it if it just doesn't work! Would you be able to PM me a bit more about your experience? xx
Thanks everyone for your replies..
Thats something else though ^ too much info and I just cant take it in. I think it will take a couple of reads for me to get in all your info youve kindly given, so I will have another read tomorrow (when Im less tired too). I appreciate you all taking the time though, thanks ever so much :)
I considered CFS a bit more in depth a few days ago. I actually watched a video on one of the ME websites the other day and cried.. everything they said sounded just like me, but I know a lot of GP's dont feel its a real problem do they.. I guess Im worried its something else that would need proper medication or something.. I dont know!
My Gp is sick of me I think. I went last time (Im probably there every other month.. Sometimes more often, some not.. Some times are terrible and I cant cope and I make lots of appointments. Each time I get something that normally Id let clear up on its own, I go in the hopes it will shed light on the bigger problem. Where as some times it lifts and I can cope so I dont go for a while! Pathetic really!
I had an ectopic years ago (4 maybe?) and for about 2 years I had terrible problems and they thought I might have colitis and stuff, I think twice Ive called paramedics.. Once because I collapsed after coming home from blood loss/the ectopic, another time from tummy pain. Thats gone the other way now though, its more constipation/slow digestion etc - another reason for them to be clueless about me because my tummy symptoms change and dont fit with anything clearly! Ive had treatment for GERD, Motilium lately to speed things up (Cant cope with the side effects of those, so I still feel like yuk).. I still get the nights where my stomach is spasming and Im trying to be sick, am doubled up in pain, sleepless nights.. The general daily struggle to eat etc, hence the weight loss!
Anyway, last time I went she read off the screen as she was trying to find the results from the last test Id had (a breath test because of tummy probs), and instead she found the results from a smear (for spotting between periods - all fine).. then results from a tummy scan because of the pains (again, fine).. results from a blood test.. Till finally she got the one she wanted! My notes look longer than war & peace! I was mortified. I look like a hypochondriac, but I just feel so awful.
I thought the other morning, seriously what is the point.. no one believes how bad I feel, and frankly I can no longer cope with it all. My partner keeps asking me to do this and that, go here and there, but when you feel like you're about to drop and you've got to be somewhere other than your bed it sets off anxiety, so then I have to deal with that too!
I basically feel like I cant cope with life anymore. My partners Mum has terminal cancer so hes burnt out (yet still going, getting on with it and coping. Ive been the one falling apart.. as usual). I lost my Grandad to cancer 9 months ago, the year before that it was my aunt to cancer, the year before my Nan, 2 years before my other grandad.. my partner in '03.. And I will admit, Im just terrified someone else will get sick because I dont want them too, but also because I can no longer cope, I wouldnt be able to be there for anyone in this mess.. I just want to stop life till I gain some strength back to cope with it.
Anyway.. basically over the course of the last 4 or 5 years (since the ectopic pregnancy) Ive had numerous tests.. Upper endoscopy, X ray on bowels, ultrasound on kidneys because I was peeing blood (that came back fine and it just cleared up!), an ultrasound on my neck because of a goiter, that was fine.. an ultrasound on my tummy, gallbladder, numerous blood tests, 2 breath tests.. I have had low blood count in the last result, but she said nothing to worry about, its not even anemia, but I wonder if theyve missed something, or even if this slight result could hold the key (Yep, Im desperate!). Everything always comes back fine, but Im most definately not fine!
^Im just mortified about the amount of tests! No wonder they think Im mental. I havent had an MRI or CT, nor a gastric emptying, nor a camera up the bottom, not sure theres much else left! They always look gobsmacked at what Ive had done and always make a point of saying 'Youve had that test.. that came back fine. And that one.. And that one..'
I asked about adrenal fatigue because of the years of anxiety but the GP said it was fine, although I got the feeling he didnt seem to think it was an actual thing in the first place!
I feel burnt out, like my body wont work properly, like 70% of it has aged or something(!), or like Im just getting sicker.. Yet what do I do all day? Basically nothing! My poor partner works all hours while I struggle to cope with daily life. Not having to work is hardly stressful is it.. So goodness knows how awful I would feel if I was forced to work, frankly I dont think theres any way I could do it. I just cant get answers, and until I do I cant get better... Hence wanting my medical notes, although knowing my luck they wouldnt agree because of my 'health anxiety'.
^Ive really gone on there havent I. Im really sorry :(
Anyway.. The anti-depressants, I forgot to answer, sorry. Ive tried several, the last ones citalopram gave me terrible stomach pains - it could be the beginning of my stomach problems for all I know.. But other than dabbling and giving up because I couldnt tolerate the side effects, the longest Ive stayed on them was about 2005 for a year on Sertraline :)
Hi Nikki,
Me again :P just to respond to a couple more things you've raised!
Firstly the hypochondriac thing. I know that feeling SO WELL. I'm always going in about different symptoms and one time it's my tummy, another time it'll be my knee, another time it'll be my depression, another time it'll be because I've been blacking out, another time it'll be because I can't sleep, another time it'll be because I can't stop sleeping... lol the list goes on!
But what you have to think is that you have a multi-systemic illness (or illnesses) - in other words, a lot of your body's processes, organs etc are affected by your neurological problems. Neurological means nervous system/ the brain, which is the control centre for the rest of your body - so no wonder you've got such a massive range of symptoms! At the end of the day (I hate that phrase but it seems appropriate here lol), the doctors are there to help YOU. They are there to make your quality of life better, or help you to help yourself in that way. It is their job to address symptoms and take them seriously. It's not your fault your body is misbehaving in a lot of ways!
Secondly, the thing with the GP you talked to not really considering adrenal fatigue etc. You WILL find GPs who aren't particularly receptive to the idea of CFS/ ME and other "invisible" illnesses, which is utterly ridiculous considering all they know about the body. But sadly, you will find those doctors. What you have to do is persevere and if necessary, change GPs and possibly surgeries. I went through *so many* GPs before I had someone who took me seriously. When I presented a list of my symptoms (which are typical of CFS/ ME, and you can find them just by searching on the internet), the GPs I saw would say "I don't know what that could be" or "come back in a month or so and we'll see if you feel better", "it's just your depression", and so on. I did actually discover CFS when I was first getting ill and instinctively knew that that was what I had, and mentioned it to one doctor and he said "well I doubt you do have it. But if you do, just exercise. That's what we normally do for CFS patients." - UNbelievable! Considering I got ill at 17, it took me 3 years and actually going to uni and going through all the doctors at that surgery until I found a decent doctor who was dedicated to helping me! So I didn't actually get a diagnosis until I was 20.
Thirdly, you keep talking about your "poor partner" and him having to work while you do nothing. Let me just flip it around for a second. Poor YOU! You're having to go through this hideous physical illness with no understanding whatsoever. You're the one having to go through days where you can barely do anything. He might be having a hard time, but so are you. Please remember that and try and take as much care of yourself as you need.
Also, it sounds like you've been through so much over the years that you could maybe do with some therapy to talk it through and work through any unresolved issues and feelings you have about it. I personally have just started psychotherapy and have been going for about 4 weeks now. As far as I know it takes a few months for you to start noticing a difference. But I'm sure it'll help in the long run and I think it's worth having for anyone with CFS/ ME type problems - if only to deal with how you feel about everything in the light of your illness!
A lot of my psychological issues recently have been down to not feeling like I have any purpose, mainly because I'm stuck in the house all the time because I'm too unwell to do anything! It's horrible feeling "stuck" and like you can't move forward with your life. Feelings related to being this physically unwell all the time have massively contributed to my depression and I think they do for a lot of people. So don't feel bad if you consider counselling/ therapy etc. It doesn't mean you're mental!
Sorry for the long comment again.. take all the time you need to read it (I'm the same, my brain cannot deal with so much info at once!) xx
Hi Nikki, your symptoms don't sound like MS (which my husband has), but do have a ring of ME (which I have) about them. The sore throat thing caught my eye particularly. Personally, I found mainstream medicine no help at all. It's a horrible diagnosis to have.
Someone told me about the Lightning Process but there was no way I could afford it and I honestly didn't like the sound of the principle of it in any case. I was lucky enough to find a naturopath who prescribed a particular kind of minerals for me. I'm not cured but I am an awful lot better than I was.
On a general point, I'm probably not being very helpful by saying this but a blood test will NOT diagnose MS.
Hi nikkinik, I just wanted to say from reading this thread, I can see you have been through a lot of emotional stress. Life can be so tough, but we still carry on somehow. I hope you get the diagnosis that helps you, and hopefully with all the support from people here, you will. Sometimes just knowing what ails us (whether physical, mental/emotional) can be so helpful. Good luck. :)
Just wanted to say that after reading your latest post & all the tests you've already had it really does sound like CFS/ME, nervous exhaustion, burn out etc. Also chemilyx's post is really good & both your experiences with doctors are very similar to mine.
I also felt isolated, misunderstood, unable to cope with normal life & just in despair & wouldn't you know it - all those things contributed to my 'illness' & kept it going.
All I can say is that I'm soooo much better now & have been for about 2 years. I can bring my symptoms back though - all I have to do is stress, get angry alot, make no time for myself, worry & then worry some more, focus on negative stuff, rush around doing too much etc etc. But the LP taught me to do the opposite.
Chemilyx - I will pm you later as talking about the LP sometimes annoys / upsets people but I will just say that it helped me to really start recovering from all this but I did get abit stuck at times. Some of it I just found too difficult to do - abit too happy-clappy & so I found the parts that I could relate to & that made sense to me & found my own way.
I also found a book by David Hamilton called 'It's the thought that counts' INCREDIBLY helpful, it backed up a lot of what the LP is saying & made perfect sense to me. It's about the mind-body connection.
Now I know that I got ill because of stress & emotional upset but I know that for some people their CFS symptoms can be caused by other things so I can only say that this worked for me, it may not be for everyone.
Don't despair, if it is CFS/ME stuff caused by stress etc then I'm confident you can get well - I did so why can't you? You just need to find the right help for you & your situation.
Take care,
Seffie x
I have an M.E. diagnosis and I think that's what yours sounds like. When I was particularly ill I couldn't stand in the shower either, and used to sit down to shower because it was too exhausting to stand and my head would thump terribly. I'm sorry to say that doctors have offered me zero support. Saying that, it's a postcode lottery as a friend of mine lives in London and is under the care of a specialist M.E. clinic where he receives all types of support. In my battle with M.E. I have mainly focussed on a dietry approach, trying to limit unnecessary additives and eating as nutritiously as possible. A good acidophilus supplement has also helped me, and helped the digestive issues somewhat as well. (I use Fem Dophilus but it is pricey and hard to find in the uk).
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