M.E. / chronic fatigue syndrome

[bassetgreyhound]

Just posting to see if anyone else has this horrible illness. My mum has M.E. 12 weeks ago I was a normal 28 year old woman working 30 hours a week as a trainee butcher. my life changed literally overnight when I came down with labyrinthitus. that took 3 weeks to clear confirmed by blood tests and iv never recovered. my fatigue and pain is awful, I can't sleep, I get regular headaches and can only walk short distances with the aid of a walking stick. My doctor has been brilliant throughout and has ruled out everything she needs to with blood tests. because of the guidelines I have another month to go before I can be referred to an M.E clinic. I feel so alone. I live on my own with my 2 dogs and am really struggling on ssp . I have no family or friends nearby the only human contact I have is with my doctor every week. I was just posting to ask how people manage there condition. A trip to tesco will leave me wipes out for 2 days. I don't know who I am anymore

Oh, I can do rude

sorry to hijack op
Garlick, definitely check all your blood test results yourself as i mentioned below. also check b12 is over 500, ferritin over 50, vit d high (is it over 80? i forget) and get a celiac test done. so many people are fobbed off with thyroid. 50 is a v low dose but it really depends on how your t3 and t4 are. i always feel a bit hyper when i first increase my dose then it settles down. hopefully you can ask for an increase after bloods are done.

I will, thanks :) They did irritation tests and I was told to give up dairy - pissed me off to lose cheese, but the marker went away and it did help my unpredictable GI tract [ahem]. No indications of coeliac, thank god: I have a sulphite allergy; it's bad enough living without cheese, wine & sausages!

Apologies from me, too, OP.

QuietNinjaTardis - it depends how ill they are. AFAIK many people with ME find it hard to tolerate much alcohol. Some people with ME still work reduced hours, others are bedbound and totally dependent.

Dr David Bell's scale.

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

futureme - gingerbiscuitandacuppatea has already answered, it affects the immune system, but if you want more information try www.ukrituximabtrial.org/

for anyone who hasn't already seen this

Are you sure it's ME? I had Labyrinthitis really badly and was weak as a kitten for 4 months. Not sure how a blood test can confirm the evidence/lack of Labyrinthitis. I never had one despite seeing a top specialist. Labyrinthitis can go on for months

Gosh cfs kate. Ive read through your list and i dont thnid realised how much id normalised having ME/cfs. I crash during the day at some point depending on activity and certainly would strufgle with fixed ours part time even. I kind of thought that as i was no longer housebound id be making a fuss and rarely mention it.... even at medical appointments. I kind of excuse it on my weight or fitness or the kids. Really i still have ME. Sigh. I hate it.

thats a depressing scale kate!! i dont even consider myself to have me, i have an underactive thyroid, and i would put myself at 50.

sanfairyanne I'm a 50 too but earlier in the year I was closer to 30

I know what you mean about 'Normalising' futureme - I also still have ME/CFS and despite feeling 'better' I still have a long, long way to go

It's been 20 years

My daughter is at 0%. And actually getting worse so at moment she is only out of bed for commode. She only sits up to vomit or to have feeds via NG tube ( have to be at 30deg angle) but then ed rises so she doesn't have to. She has pressure sores from immobility. She doesn't know my name ( she knows I'm mum but generally calls me 'my lady' her dad is 'that man' and the pets both get called puppy ( one giant dog and one cat).). She hasn't been to school for 2 years, missed all of GCSEs years and I've slept in the same room as her for last 8 months now as I am too fearful for her. She faints ( even lying down) and spasms and can fall out of bed ( strangled even over the cot bars on her bed). Most days she manages to open her mouth so I can clean her teeth and do her inhaler. Many days she can't. I get her changed about once every 10 days as it uses far too much energy. It's a fucking awful misunderstood illness that is robbing my daughter if her life. Sunday she told me ' I don't mind missing school and my friends but I wish I could listen to music or watch TV for a few minutes' breaks my heart

Oh, over, I'm so sorry. How incredibly painful to watch over your daughter missing the intense & stimulating years of becoming an adult. to you both.

I'm at around 35% most of the time. It's going down, very gradually but noticeably. San, I've just knocked my thyroxine back down as realised it was probably behind my anxiously-racing thoughts and complete inability to sleep no matter how tired! I've missed out a few days' tablets and am dropping diazepam to slow my mind & metabolism: hate feeling like a home pharmacist, but grateful at least to have the drugs.

Overthemill we are here for you. You are doing so well. I wish that we knew more about this complex condition to allow a cure to be found or even a reliable treatment.

I'm so sorry for everyone on this thread. I am not questioning how unwell anyone is apart from sil bf. We have been on a family holiday this week and he has been out every day with us doing touristy things, drunk several glasses of red wine every night and went for a 6km walk on thurs. Yet he cannot work at all.
Now maybe he does have cfs and that's why I asked how it can present but I am not sure he does and it makes me angry because it's doing a disservice to all of you and others who are genuinely suffering.

But I know people who 'genuinely' have CFS at the severe end and still go in holiday! I think you are being judgemental. Does he have a formal diagnosis? If so stop going in about it. You aren't a medic so have no right to question it. Would you query a cancer diagnosis???

Overthemill you're right, I am judging and I shouldn't be. I haven't said a word to him by the way this is just my thoughts. I will stop querying it in my head and just accept that he has Cfs. And I never said he shouldn't be on holiday! Just thought he was doing a lot for someone who is tired all the time but again you're right and who am I to judge. I'm not medical.

If it was me I'd pull all the stops out for a holiday /day out/seeing people and then "crash" with flulike exhaustion for a few days to a week afterwards.

Im sad to say I feel quiet ninja is how a lot of family members seem to feel about relatives diagnosi. Mine seem to but dont outright say it. Its really hurtfull.

I don't think youve read my posts properly. My godmother had me and she was really ill. I'm not questioning whether cfs/me is real. I know it is! I just don't know if his cfs is real, but as I've acknowledged I'm judging something that I know little about and therefore have said that I will stop and therefore accept that he can manage nights out but not work.

I think we are all a bit snippy because we're constantly faced with people deciding there's nothing wrong with us - since this includes the DWP, those of us who rely on benefits are painfully aware this literally threatens our survival. People with "invisible" illnesses who work have to cope with fear of reasonable adjustments being taken away and losing their jobs. When we go out, we're aware of being judged for having fun!

I can't diagnose your BIL I can see why you have doubts but, basically, it's a matter of letting him and SIL get on with their lives in their own way. He might be heading towards recovery. Then again, if he turns out to be a cocklodging waster, you know where to point her for advice!

Thanks Garlick. I understand why everyone's upset with me. I didn't mean to do that. I am worried that he's just a waster but as I've been told. I have no way of knowing so need to let them get on with it

I too have CFS (I use CFS because that is what our local health area uses and what am diagnosed with) and function now that I am very much better around the 50% level. However I found out that I also have POTS (poor regulation of heart rate and blood supply to the upper body and brain) and it was while I was on holiday the penny dropped because I was very much better on a salty diet (and someone else cooking/cleaning!). I mention this because I cannot work full time either (I usually need to rest alternate days, so only work part time) but I could now - on a good day - walk downhill for a few KM. It can be a variable condition. There is often payback for over doing it, or travelling or whatever - its a balancing act. The payback can be delayed. This can be quite helpful, but is not wise in the early stages of the illness. It took me a long time to learn how to pace, - and get well enough to be able to mess with the pacing, and not regress. I know I still have CFS (and POTS) but life is mostly pretty good now. I know if I tried to work more I would most likely relaspe to a poorer state ( yes been there tried that), just as I often do for a holiday.
I found the early (undiagnosed and unsupported) months of this illness the hardest - partly because I kept expecting my body to sort itself out (it always had done before after all- I just thought you had to try to do more), and partly because of the attitudes lack of understanding and expectations around me (medical, family friends etc). I also tried to do too much (literally to keeling over or being too weak to do anything other than lie on the floor). I wish someone had just told me to stop trying so hard to be well!! I possibly would have got more well sooner. So I am saying - don't push yourself. Listen to your body! If it wants to rest - well let it.
I suspect there are many causes of CFS and ME (including undiagnosed treatable conditions) so there are probably many paths to better health for those affected. The things that have helped me get better is treating the other things that were not right - I was vit D and B12 deficient,(too long in a hospital bed I suspect) but now I treat that. Each little thing helped a little bit. I read up on the mitochondrial theories (mitochondria are cell organelles that produce energy at a cellular level) and followed a protocol to help with poor mitochondrial function- and I found that helpful. I take D-ribose - a sugar that makes up RNA/DNA (I think!) and seem to relaspe every time I forget it for a while - so for me it helps.
Its good having a knowledgeable flexible minded GP(who knew you pre-illness) who will rule out (where possible) the other miriad causes of extreme fatigue and illness. I would also say do not allow doctors (or yourself) to blame everything on CFS/ME.
I hope you will get more well, maybe not soon - but slowly and surely.
By the way although my CFS started after a serious illness that put me in hospital for ages, my decline into illness started with labyrinthitis.

Maggiso my dd has POTs as well and also probably ehler danlos syndrome ( she's too ill to travel for formal diagnosis). And she has a myriad of symptoms which overlap. For those who are in recovery or rehab stage pacing will always be important but that might be your own way not the NHS way!

Ninja I didn't mean to flame you but just suggest you may not know whole picture. A friend from an online support group took her severely affected son to Rome for 3 nights. A few weeks ago. He saw the Colosseum and had a genuine Italian pizza and was pushed in his wheelchair around St. Peter's square and has spent the last 3 weeks in bed. But he has those memories. And he hasn't left the house for more than a few hours for the entire year beforehand. Worth every bit of payback I would say

It's fine overthemill I understand your reaction. I suppose I'm just a bit suspicious of him for other reasons and this doesn't ring quite true for me. But as you say I don't know the full facts so I can't judge.

Hav8 read all these because I have M.E. and low energy atm. But Lionheart it is NOT psychological in any way. So annoying to say that. M.E. can be caused by a severe virus Mrstweedie. I wish the OP well. Pace yourself. and enjoy the good spells. Get benefits if possible and use to get help.