reply to Bryan and everyone else too

Posted , 7 users are following.

Hi, I haven't been on here for quite a while as I haven't been up to it.  I've just got up after a nasty bout of vomiting yesterday evening, which wiped me out completely.

Firstly, I am so sorry to hear how ill and exhausted you are Bryan, this is one horrible illness isn't it.

We all seem to have contracted M.E. in the first place, after some form of illness, and I find it extraordinary that more and more people seem to be getting M.E.  It's scary really, and often makes me wonder if there's something else to do with it?  Sometimes i wonder if there's some form of germ warfare, I know that sounds ridiculous, but in these scary times, you never know.  I only thought of that, because when i was growing up in the 1960's, you never heard of people having to give up work through exhaustion - it only seemed to turn up more, in the 1980's, maybe i am wrong?

As for forgetfulness, I was so bad i thought I had an early onset of Alzheimer's - my grandmother had it you see, so I know how it effects someone.  But then I was advised by an online Thyroid association to have my B12 checked.  My consultant at hospital sent me for a blood test, but wouldn't include the B12, so i just ticked it on the form myself!!!  Hey presto, I am dangerously low in B12, and started having B12 jabs every 12 weeks exactly a year ago.  They really work, and at least I have some of my brain working again!!!!

I am so lucky that an M.E. clinic I attended from 2012 to 2013 was superb.  I couldn't go to all of them, but the ones I did attend were really helpful. They taught me to pace myself - which is SO difficult when you live alone, but I do it when I can.  I've since also been diagnosed with a hiatus hernia, so am limited with exercises i can do.  I have put on 5 stone over 5 years, and it's all because I often have to stay in bed or lie down.  I can't walk very far, and get ill every time i have to go out anywhere.

However, my GP surgery put me forward to see a health trainer on a one-to-one basis.  He has helped me immensley - all for free.  My GP has recommended light exercises I should do, but of course, they are few and far between because of feeling so exhausted doing the slightest thing.  But I try whenever I can.

I also bought myself an exercise bike a few weeks ago, and as soon as someone can help me put it together (I got it off a catalogue and they sent it in pieces!!!)I will attempt to use it to try to strengthen my legs.  I've had 'treacle legs' since Monday, so can't even walk at the moment!!!

It's a long hard struggle, but I live in hope.

Thankfully, I received a DWP letter last weekend and have passed the medical to go on to the Support group of ESA - Yippee!!!!  I am over the moon as i can now relax and get on with trying to get better - if i can?????

I hope you all find a good M.E. clinic like mine, and help too from a health trainer at your surgery.  The nurse at my surgery put me forward for the health trainer.  Maybe you could enquire with your GP?

Best of luck to everyone and I hope that there is some sort of cure - or prevention soon.  I just want my busy life back and would dearly love to be able to work again - I truly miss the cameraderie from the work place, and the company too, even though a few places I've worked have been awful with bullies, but overall my career has been working with some lovely people, and I'm sure they still exist somewhere???  LOL!!

4 likes, 24 replies

24 Replies

  • Posted

    Yes ME was never heard off in the 60s. People didn't have dementia until a very old age.I contacted M.E after a severe virus.

    People didn't suffer strikes at 60. I have had two one left lateral and one central.

    Like you I live alone.

    I had eleven blackouts one where I was on the floor for two and a half hours, nothing to grab tp help me up, therefore I ended up with huge blisters.

    Its not easy living alone especially at Christmas, I have no family sadly.

    Try and be positive. Xx

  • Posted

    Hi yes have you ever thought of getting your bloods tested? if not I really think you should! You sound exactly like me! I think if you haven't had your bloods checked that might be a really good idea. If you have did your GP think you might have a problem? If not ask him to do an ANA test. If he already had and it's still negative pop back as I think there is a strong possibility you might be helped with a drug called Hydroxychloroquine as long as you don't have eye problems. If you do there are other things that might help. 
  • Posted

    Hi everyone,

    Just throwing in my "two penny" I have my cfs/me from a car accident and was not ill prior to onset. Also, I know of people with this after giving birth and have been told of babies being born with the condition. Far from it not being known about, I feel it was probably seen as something else until I believe the 1920's when its description started to gain pace? you were probably just classed as "lazy" before that or else came to an early end in the work place.

    Its good to hear that you have been put into the support group longtallval as like you say, hopefully, you can relax a little with that.

    Horrible condition we all find ourselves with and lets hope that as more becomes known about it that a definite cure can be found.

    Best wishes


  • Posted

    Hi Longtallval, love the name! biggrin

    A lot of people mention drugs before ME onset. I was given steroids for skin itching, and I had a bad virus before it, and though I didn't take antibiotics then, because I was too sick to get to the doctor, I had in the past.

    I wouldn't rule out germ warfare, after all they test the manufactured germs in the planet's atmosphere and they don't just disappear.

    I've also wondered about computers/mobile phones etc. I used to wear headphones with music whacked up virtually all the time before I got ME. It gave me tinitus and if I talk on the phone too long my head hurts. Can't be good pumping electricity into our brains and bodies constantly can it

    I lived in a place that had sick buiding syndrome. I studied too hard, over doing it. I had a stalker for a year and it was one of the most stressful times of my life!

    So many things could have contributed; will we ever know! I hope so. I think us comparing notes is a good beginning but I wish there was a way to do some kind of study for the medical professionals.

    I live alone too and I find that having to look after myself the best I can manage uses up my energy so I can't exercise too. Anyway the dangers of post exercise malaise worry me. I'd advise that you don't overdo it on the exercise bike, but you know that and I've been virtually bed bound for 10 years so just because I'm not up to it doesn't mean you're necessarily not. All the best with it. 


    • Posted

      Excuse me! That was rude. That's not what I meant; people have it to varying degrees and he might be ok with the exercise bike. What's wrong with saying that? I hope he can do exercise, don't you?
    • Posted

      However if you have your bloods checked and they are normal that depends upon your age, it's also called fibromyalgia or chronic fatigue syndrome. This may or may not show up anything. If it doesn't and you are indeed Female, of a certain age and have stress are you by any chance double jointed? 
    • Posted

      I'm a bit confused people? This is longtallval's post and not Brian's? It is her who has the exercise bike and Brian hasn't posted on this discussion at all.

      Hope we can get back on track with this one.


    • Posted

      Hi Georgia S,

      Just wanted to comment on the tinnitus and feeling of talking on the telephone. Myself and a friend with cfs/me both have these issues too.

      You're right, comparing notes is a great place to start.


    • Posted

      Also Pam,

      Just curious, have you found a link between being double jointed and cfs/me/fibromyalgia?


    • Posted

      That's really interesting because I haven't heard anyone else with ME say that. Perhaps the headphones didn't give me the tinitus; I only noticed it after I'd had ME for a while and moved to a quiet village.

      When you're on the phone does it feel like a headache or a different kind of head hurt? Mine feels like nothing I can describe, except that it's like pressure of some sort, heavy pressure on the side of my head where the receiver is.

    • Posted

      Hi GeorgiaS,

      With the tinnitus it can get quite awful some days and I just have to ride It out. I had it a bit before but now It can be so much louder and is in one ear more than other I would say. Regarding the phone, I just feel exhausted with conversation and my energy drains when you're put on hold with elevator music and an automated voice. At worse, I can feel unwell almost instantly or extremely frustrated and 9times out of 10 hang up.

      Not sure if its the same but I can get what feels like heavy pressure or maybe numbness if the call goes on too long? I didn't have problems with phone calls before this.


    • Posted

      Because I am! I have been all my life at 68 I'm Beighton 9 + 2! The reason for the Plus is two my toes are hypermobile as are my ankles! My feet have also grown 2 shoe sizes with 4 sons! The normal is that most grow one shoe size hover many kids they have but I have also a hormone condition as I have Psoriasis and POTS too. The medication was because from a mother with Psoriasis I have PCOS infertility problems. I never give up however life has been. I saw the first Ferility specialist a Lady Freda Osmand-Clarke back in 1971. She started me on all manner of drugs and I got pregnant but my them GP OD me and killed the baby at 16 week gestation. The next gave me preeclampsia and sadly while he was healthy and fit he died crying at 11 weeks. Then pills to dry up my milk they didn't along came sons 23&4. The last conceived on the progestogen mini pill! Progestogen makes bendy people more so and gave me POTS. It gets worse but unless you have a hormone problem then EDS gives you exhaustion called POTS! 
    • Posted

      Yes tinnitus is really you listening to your brain? No a chap called Britain mentioned something and his history was one I recognised only too well! Not to do with This group but it then linked to this group! 


    • Posted

      Morning Pam;   I am not trying to be rude, but don't quite understand what you are saying/referring to..??.....I, too, have had PCOS over a period of my life, and Did Not need any assistance in falling first 2 were born, before official diagnosis....but know that myself and my mother both had the same symptoms.....Mum had 5 babies.....and then after having my 3rd child, was diagnosed (and only then because I was at work on day 1 of my cycle, when the drs asked what was wrong,  and experiencing my Normal symptoms.....they referred me to my Obs and Gynae, who did a Laparoscopy....found cysts etc, and lasered them....I had a few more of same, and had another child in between these for being Hypermobile, I once had a thumb this way, but after dislocating it playing basketball, at age 13, it has never been hypermobile since......yes, I, too, like others have a Widened foot, but not any change in length..............I feel that you are maybe appropriating ALL your issues, into your now condition of CFS or Fibro????..............Bron
    • Posted

      Hi GeorgiaS; yes, I too, find that when having to use the phone, my head becomes "full" has got to the stage that I cannot bear to have to use the phone for any period of time.  I also find that my arm/hand becomes overly tired, and have to change the receiver over to other side/hand etc during any pro-longed for the Tinnitus, you ?may have attained same from use of Head-phones, as if you read up on Tinnitus and it causes/treatments etc, you will note that any constant "annoyance/sound" will/can cause husband has developed this in his ears (although, luckily not on a Permanent basis), but is pronounced after having to use Heavy Tools/jackhammers etc on construction site/s....this is why WH&S insist that anyone using heavy machinery wear Ear-Phones/plugs to protect their ears/ is NOT "you listening to your brain" is a Physical Condition, and for some, there is treatment (a simple medication is Stemitil....usually used for nausea, but has proven beneficial for Tinnitus)...........have you had your hearing tested by an Audiologist, and if this proves positive for damaged hearing, then by being seen by a Specialist is this field, you may get some benefit??...............good luck.............Bron
    • Posted

      We'll have you thought to have a blood test? ask your GP to test you for an ANA? That might help. Obviously if your bloods are normal he may find other things like your hormones are out of kilter. Have you seen an endocrinologist or your tiredness could just be age related as certainly when you go through the change then hormones do play up. What ever I would seek a full blood count and possibly then suggest to test for any problems that might be causing this. Vitamin deficiencies, or possibly test for autoimmune problems too. Better safe than sorry. Obviously I do know about PCOS and the drilling you had so I would suggest either seeing an endocrinologist or getting your GP to do a reall full blood test. The other possiblitity is you may either be hypothyroid or if your overweight then becoming diabetic. I really do think your GP needs to take you very seriously and either do an enormous blood screen or refer you to an endocrinologist! 

      I little tip, do NOT assume that your GP remembers your life history! Please write down everything you can remember. I know it's tough but I have taught my group and my consultant to think like a tornado! She agreed it was a good way to work out fibromyalgia. As I think you know I have Sjögren's, so that's how I have worked my life out! Think what your parents had/have Then think PCOS, then if your bloods are Negative but you have a positive ANA and you have either nothing of more likely there is a tiny chance you may have some other problem. Depending upon you Syptoms you go down the dreaded Psoriasis line and no doctor will ever take we Seronegative patients seriously! We are sero negative to most problems. I think therefore if yet again your GP finds you totally Seronegative to everything please write down your life history all the stresses and strains what you inherited, whether you went septic, childhood illnesses etc and take yourself of to a really good consultant. If Endocrinology don't find it them possibly Neurology might. May I ask are you good at spelling. I am just trying to think out any possibility that might help you to and a consultant get a clue. You really do go down the dreaded Psoratic path and believe me it's a long and winding road!

    • Posted

      Hi Pam,

      Just wondering if it may be worth setting up a new discussion on here to see if others have a link between being hyper mobile and cfs/me?

      Do you attribute your cfs/me to your fertility issues? It sounds like you've had a rough ride in that area.


    • Posted

      My tinitus doesn't seem as bad as yours Beverly. I always have a cool fan and a dehydrator running and I don't hear any ringing unless they're both turned off. Doesnsn't some sort of low noise relieve it for you?

      The phone drives me insane! I get really tensed up about the repeating voices. They've already said the message so why do they have to say it over and over again as though we're idiots! Grrrrr

      Also I usually have to have a sleep in the afternoon and sometimes I forget to take the phone off the hook and get sales calls. It ruins my sleep and I'm furious. Things like this make me feel iller too. I think we go into the fight or flight response, which is such bad news for us.

      Have you heard of a call blocker? They reduce cold calls a lot.

    • Posted

      I;m sorry Pam;   but you are starting to push too many of my buttons, you really think that I have "just jumped on the band wagon"????? I have been there and done IT all over the past 20+ years, and my Fibro and CFS have Nothing to do with my PCOS and other issues...............Yes, I have seen MANY specialists, including all that you have said..............I have done my research and KNOW what works for me................thankyou all the same...............please don't bother replying....this started out as a Friendly input re "missing our previous life/s from Longtallval......nothing re "new help for me"..............Bron
    • Posted

      Hi Georgia,

      I tend not to think about the tinnitus most of the time, only when its really bad. I too have to go to bed on many afternoons. I actually find low level noise irritating when I'm resting and as a rule do not have music or background noise. I turn off the light draw the curtains and hopefully switch off. my bedroom is two flights of stairs away from the phone so its quiet enough to ignore and my phone I keep on silent unless I'm expecting a call.

      I think you're right, things that usually don't bother you become a fight or flight response with this condition! It's something I notice in myself and want to work on at reducing as you say, its not good when you have cfs/me. So many bits to this condition to have to work on besides trying to balance energy levels.


    • Posted

      Thanks for the advice! I've never had my ears tested and my doctor didn't suggest it when he diagnosed tinitus. I'll find out about it; it'd be so lovely to hear the peace and quiet in this little village, if that makes sense! cheesygrin

      I used to wonder if I was hearing electricity ringing in the wires in the telegtraph poles etc outside. At first I'd wander around my bungalow at night trying to find the source of the ringing, and then I'd go outside to see where it was coming from! This is when I didn't know about tinitus. Someone else online was thinking we were hearing electricity too.

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