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

I have ME and have really struggled in coping mode the last few years with a childnthat doesn't sleep through. I have beeter months and forget i have it then beat myself up for being weak and not effective.... (voice of my parents).

Ive been in bed all day today and my husband has taken the kids. I feel rubbish in myself as i just feel weak, i dont feel sick or anything just so very very weak, as if my body has given up and my mind is shutting down. Im supposed to be camping tomorrow. I hate this.

I'm sorry you feel so awful futureme, if you don't feel well enough to go camping then you can't go. You need to rest and I hope this bad patch pases quickly for you. The malaise is horrendous

The NHS always moves fast to a diagnosis of CFS/ME??? No they bloody doesn't!

Last week I had to visit GP for repeat meds for myself - this is as a temporary patient as living in nursing home with my CFS dd who is bed bound totally unable to walk, unable to eat and is tube fed but now body rejecting feeds, severe cognitive impairment, severe unmanned pain ( cries in pain 24 hours a day), sleep deprived ( slept 5 hours in last 10 days - as observed by nursing staff) etc etc and the GP asked me if I was mum to dd ( we have a very unusual surname) and what on earth did I think could be wrong with her because CFS wasn't a real illness was it? It was just a bit of tiredness. Well you could have blown me down with a feather. She wasn't joking

With regards to severity - there is a range of severity from mild to moderate, moderate , severe and very severe. My dd appears to be one of the severest affected in country according to the many specialists. There is a functionality scale with you can work out your percentage of normal functioning: she is 0%. Some people obviously can do ore than others and they may indeed lace them selves to do something special. So rest up for days before doing something then restrict up afterwards. My dd was hospitalised after a friend visited her for one hour on her birthday.

It is NOT psychological but I imagine that the impact of having a severe chronic illness may lead to issues later on. My dd cannot even clean her own teeth or raise a spoon to her lips. I kind of envy those who can go for a pizza but wish them all well. I pray for the day we can go for a pizza again all the family together having missed out on all the birthdays and Christmases for last 2 years, 18th and 21st included. It's a horrible misunderstood illness and it makes me weep for my dd every single day

Sorry you are feeling this way OP. A few months ago i thought i had ME too and had all the same symptoms as you - felt awful, totally debilitating. In my case it turned out to be bitamin D deficiency which apparently is very common and is easily treated with vitamin supplements. Have your vitamin D levels been checked recently?

Whatever the cause, i hope you feel some improvement soon and I agree with other posters about pacing yourself and not pressurising yourself to do more than you feel able to.

My diagnosis was rapid enough. I was referred to endocrinology in September, saw the consultant in November. He sent me for a glucose tolerance test, which took place in January. I returned to see the consultant in February and he told me I had CFS/ME, that there was help available, although he did not specify what this was, and then he discharged me.

I then went to see my GP, who agreed with the consultant, gave me a leaflet which said there was no diagnostic test, an infinite variety of symptoms and no treatment and offered me anti depressants.

In fact, once I was able to resolve: a severe ferritin deficiency, a severe vitamin D deficiency, a folate deficiency, low levels of vitamin B12 and an underactive thyroid, all of which were obvious from my blood test results, I regained my health, but only after fighting the NHS for four years.

OverThemill, I'm sorry your dd is so badly affected, it must be such a challenge for you all to cope with. Is the nursing home good with her, not trying to push and graded exercise or putting lights on etc when she can't cope with it? I really hope she starts improving soon. It is appalling that so many GP's still don't think M.E. is a "real" illness, or think that it is a case of depression and lack of positive thinking. It really makes me so angry and frustrated that this is still the way we are viewed. And for a GP to say that to you when your dd is obviously very ill is appalling.

Quiet, M.E. also fluctuates in severity during the day, week etc. so there may be times when you are unable to do much at all and times when you are able to push yourself into going out (probably suffering days afterwards). It does seem odd that he is going out several times a week if it is at the same time as saying that he can't answer work emails, but cognitive function is often very limited so perhaps that is a big barrier for him. Or perhaps the going out is the reason he can't answer emails. It is a very difficult illness to understand without going through it yourself, and how people cope with it (how much they push themselves and then crash, or pace carefully to avoid crashes) is also very individual.

As for NHS diagnosis, I often hear of people going undiagnosed for 5 years or longer. You have to be significantly ill compared to normal functioning for 6 months (4 in some cases) to be diagnosed as well as having other things excluded and having to fit under a tight list of symptoms. Also the number of gp's that don't believe in it is still high and their patients will be told its just depression, not listened too, told to try harder and made to feel like it is all their fault until they stop going to doctors because they have lost faith in their ability to help.

PleaseMrs, M.E. is the last thing anyone would want diagnosing with they they have curable problems! It is really good that you found out the causes and are recovered. unfortunately there is very patchy quality of diagnosis in the UK, some areas are less thorough than others and not only does this leave people with the 'dustbin diagnosis' (gps are recommended not to bother with extra tests once you are diagnosed as ME) it also stops them getting the treatment they need.

It also muddies research when people who do not have ME are included.

It is really bad, there needs to be a better diagnosis criteria, that is used UK or world wide. the ICC (international concensus Criteria) as used in this document on the Invest in ME's page www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf would be a very good one to use.

Better yet we need a diagnostic test, then there would be no doubt over whether people have a physical disease, and diagnosis would be quicker and conclusive.

& once you have ME/CFS you can't have ANYTHING else - it took 5 years to get a fibromyalgia diagnosis & now after 20 years of ME/CFS I am starting to feel more 'normal'

Due to a Zinc, Folate, B12 & Vit D deficiencies being rectified.

Now I'm not saying the deficiencies caused my ME/CFS but I do know they stopped looking for anything else once they diagnosed it AND that the NICE guidelines (correct me if I am wrong) state that once ME/CFS has been diagnosed they can no longer do blood tests for both B12 & Vit D

These things cost pennies - & I am telling everyone I know with ME/CFS to take Vit D & B12 (spray because of absorption issues) because while they will not cure you, they cannot harm and you might feel better

I used to laugh when people told me to take supplements now I take those 2 religiously

I have CFS and fibro and agree with the points MrsTweedie is making. Some health care professionals are quick to diagnose fibro and/or CFS. Once that's happened, it's very hard to get them to consider other conditions.

OP, you may or may not have CFS. It could be a bad case of PVE which I have also had in the past, the symptoms are very similar.

I personally find the charities and their online groups not very helpful, as they focus on meds and benefits. Try cfshealth.com or the Facebook group Community of Hope for CFS/ME.

I am nine months into my NHS treatment and am so, so much better. I went skiing at Christmas which I never thought would happen again. I still have days when I struggle to walk down a flight of stairs, but I believe recovery is possible.

so long as you yourself personally looked at your results and are happy with what they say, then fair enough. but dont ever rely on a gp telling you it is "normal"

Yup. Once I had my "diagnosis" I was told that there was no point doing any more testing.

And what sanfairyanne said, I was told my results were 'normal' when they blatantly were not. I always get a printout now, just to be on the safe side.

Here is the NICE guidelines they don't say you can't have further tests! It is possible to have CFS and all manner of other conditions that would require testing but once CFS is diagnosed you don't need to keep testing for the 'underlying cause' of the fatigue unless there is clinical reason to doubt the diagnosis. And yes at present it is a diagnosis of exclusion - so making sure it's not anything else like thyroid, cancer etc etc but it is a diagnosis. Other countries have ' better' diagnostic criteria but nowhere has it right yet - nowhere is doing enough research into cause and treatment. It is exactly the same as people with MS were treated before they had clear diagnostic tests and treatment. Disbelief and ridicule ' all in your mind'. Don't get me wrong, Mental Illness is real and there should be no stigma but don't assume people with untreatable pain are suffering from a psychological illness when its physiological.

this one bit but there was another bit on the main B12 page which has changed (presumably due to new research)

Overthemill I'm so sorry to hear about your daughters condition if you ever want to chat or just offload your more than welcome to message me. I can't imagine what you are going through.
Iv had all my vitamin levels checked, I actually asked for them after a reading with my soul dog (a whole over thread ) they were all fine

I just wish there was a cure. actually went out earlier this week. only to pick up a few bits from sainsburys. today I am unwashed, undressed and unable to move far from the sofa and fleece blanket set up. I have been much worse in the past and I love each glimmer of 'normal' but I still get fed up when I come crashing down again. pacing is the most important thing I have learnt over the years. pacing and realising when you've had enough before you've had enough.

BBC Radio transcript, 2/3rds of patients improve with rituximab.

Details of UK rituximab drug trial here

There are forums at Phoenix Rising (international) and Foggy Friends (UK).
investinme.org/

Wow Kate! Thats rather exciting. What does it do? Im gettingup now at 4 to shower.... im having to make myself.nim not usually this bad at all but have completely crashed and i hate it.

What's happening to me? My legs are weak, my fatigue and pain has gone BOOM, I have a banging headache but I'm to scared to take the meds for that as the side effects sound scary. I can hardly think

Rituximab completely wipes out the white blood cells, it sort of resets the immune system. Some people on the trial have been in remission for three years now. Invest in ME is fundraising for a UK trial.

Bassett, rest, hope you feel a bit better soon.

op, it sounds like all this is still connected to the labarynthitis (sp?) and that is the route i would encourage you to press your gp to investigate. there are specialists and scans relevant to your condition and side effects that your gp could refer you for

Your symptoms sound 'normal' to me and a sign you should rest up.

I've had for fifteen blasted years now - first five were diagnosed as depression, which I do have (unsuprisingly!) Now I know more, I can trace it back to having shingles in 1994 - quite a common starter, I believe - but was majorly fit at the time, plus had a very full-on life so it just seemed like "doing too much, cancel the weekend and sleep".

I wish there was a lot better awareness; I'm only just beginning to come to terms with my limitations. And still have no idea what to do about it! I can't run my own life adequately and can't do total rest as I have to at least feed myself. I spend too much time online as it breaks the isolation.

Sorry for the pity party I hardly ever seek out ME/CFS threads as they make me feel even more inadequate.

I take all the supplements I 'should' and more - cheap ones, as I'm on benefits - and all my bloods are fine. My GP tests for a range of vitamins, hormones, etc, annually. It's not true that they won't. I have borderline low thyroid and have upped my levothyroxine slightly without telling them; I'm due for a test soon, so I'll drop it back down if needs be. I try to be vaguely active. The shops are 800 steps away, and I go about 6 times a week. I do stretches at home now & again, but weight-bearing exercise is a waste of time as it uses me up. (For anyone who doesn't know, the primary characteristic of this illness is that exercise does not increase fitness. Something's wrong with the recovery process.)

QuietNinja - I go to family parties and everybody goes so I must be performing well enough! It takes five days to prepare and I cannot do anything for a week afterwards. Hope this helps.

I love going out! From being Mrs Lively, I lost every ounce of oomph practically overnight. I miss the old me.

With all chronic illnesses, the problem you have is that other folks only see you on 'good' days. When you're ill, you're hunkered down indoors trying to take your mind off feeling like death would be a more viable option. Being acutely aware of the blame & suspicion currently endemic in our society doesn't exactly help. People have actually told me I should get myself out more "so others can see I'm really ill". WTF?

I found the NHS CBT quite helpful, bassett. I was pretty shocked to begin with, as I thought they were going to help me get better! It was about acceptance, and coping. This does actually make sense; fighting it increases stress and self-hatred, which make your symptoms worse. I might be a miserable old bag living in a cesspit these days, but at least I'm Zen about it ... mostly

garlick, something jumped out at me there, you have borderline low thyroid! so do you mean most of your symptoms are hypothyroid? is your tsh under 1 or suppressed with a t4 high in range and a t3 well in range? if it isnt, your symptoms are still hypo, and if it is, you might be one of the people who benefit from natural thyroid or t3. how much levo do you take?
sorry for all the questions! under treated hypothyroidism causes a lot of me type symptoms
(i up my dose too )

Heh, glad I'm not the only one! My prescription's 50mcg daily but I take an extra one twice a week. I experimented with three times a week, but my resting heart rate went up to 160 It's 95 now, which is still too high - but I've stopped gaining weight and hair loss has slowed. I'm due for some tests next month.

No, the symptoms aren't really down to the thyroid. I hoped it might be and was really upset to find no improvement, except for definitely related things like hair/nails and the dreaded Thyroid Cold. The cold was my trigger to add an extra tablet per week! Everything else - the fatigue, fucked-up sleep cycles, constant random infections & pains, swollen glands, autonomic dysfunctions and neurological shit - was unaffected. I'm basically that car you may as well keep running until the MOT expires.

You need to leatprn how to pace yourself OP. And stick strictly to the minimum amount of physical effort in anything.

You need to accecpt you life has changed for the next few years and make plans how to survive.

Plans include

practical plans- getting shopping delivered, getting a cleaner once a month.
Doing your laundry in a laundromat, with folding service.

Medical support plans- seeing ME groups and making contact with someone in RL who had survived . Contact your local ME charity.

Get a nutritionist and follow her diet plans explicitly - I was Dx with a candida overgrowth and one year of the most excluding diet worked wonders. I took supplements as well. ION and Bant are a good place to start.

You need to stay off fb and you need to ignore ANYTHING and ANYONE who disagrees with your plans to get well, or fights you or drains your energy in any way. Just say NO.

Let your friends know how they can help you, but tell them that your life is different now. My friends were as good as can be expected, but I changed a lot of them after the first 5 years of being ill. They just weren't able to keep up with my life on the sofa!

Find a yoga teacher for relaxation exercises. Ring one up and ask her to come round for a few one on one lessons to start you off. Get some lovely relaxation tunes from YouTube.

Treat everything you do for yourself as a cure, and if it doesn't nurture you, drop it.

My ME lasted 8 years, and I'm fine now. I was brutal about dropping anyone or anything that didn't help me. I didn't fight it, or anyone, I just accepted I had ME, and ignored and dropped everything not helping me get well.

Read about the spoon theory in But you don't look sick and use your spoons wisely!

Stay positive, it can be a one step forward two steps back until you find your rhythm, so don't be disheartened. We've all been there.

Good luck, and wishing you and everyone else afflicted with this awful dis- ease the best of rude health!