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M.E. / chronic fatigue syndrome

(74 Posts)
bassetgreyhound Thu 23-Jul-15 13:05:34

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

gingerbiscuitandacuppatea Thu 23-Jul-15 14:50:43

I have ME, I'm sorry it seems you have it too. It is really good your gp is so supportive. At least having a mum with ME you have some knowledge of it already, I assume she has talked to you about pacing? ME Clinic's vary in how good they are. Mostly they offer only CBT and GET (graded exercise therapy), i would read up about GET before you go so you are aware of the problems it can cause.

Can you get tesco deliveries? I do that now and it helps save energy for other things. I find support groups online great for social contact and for meeting other people who understand what it's like.

overthemill Thu 23-Jul-15 14:54:10

I am sorry you have this difficult condition. My 16 year old dd has it and we are currently in a nursing home as she is too sick to be at home.

For support you can try various ME charities which are all excellent. Google them - you may find a local support group too. I use an online support forum for mums of kids and it's my lifeline. Do everything you can to conserve your energy: online shopping, get a cleaner ( if you can afford it), get a dog walker etc

PurpleDaisies Thu 23-Jul-15 15:11:11

I have ME but I'm much better now (five years later). The things I found worst were not knowing how long it would last for and people not understanding that just because you look like you always did it doesn't mean you are well. I wished I'd broken my leg so I knew how long it would take to heal and people wouldn't be off with me for not coming to things or going home early. The other thing that used to drive me mad was explaining I was tired all the time, which usually led to "oh I'm tired too, you just have to push through" or "my friend's aunt/sister/dog had that too and this wonder treatment worked for them, why don't you try it?". People try to be helpful but they just don't get it.

The thing that helped me most was acceptance that I couldn't do everything I wanted to do and to be choosy about how to use my energy. Pacing really helped, so things like when I was having a good day not spending five hours cleaning and ending up exhausted for days afterwards. But still trying to do things like making sure I was up, showered and dressed even if I wasn't going out, and trying to do a little bit more as time went on and I felt a bit better. It's been gradual but I'm working part time again and exercising quite a bit now.

Wishing you all the best in what is a horrible place to be. It does get better. You are definitely not alone and I'm always happy to chat about the general rottenness of feeling tired and other people being annoying! flowers

Pleasemrstweedie Thu 23-Jul-15 15:12:13

It would seem more likely that you are taking time to recover from a serious viral infection. In many ways, we have lost the art of convalescence and just expect to take the antibiotics and be well again within 48 hours. An infection like labyrinthitis takes it out of you and it will take you time to recover fully.

As others have suggested, it would be good if, in the meantime, you could find ways to lighten your load, but early nights, late mornings, good food and a top of the range multivitamin should help you to recover.

Please do not automatically assume that you have ME. It is much more likely that you do not and that if you look after yourself now and conserve your energy, you will recover sooner rather than later

PurpleDaisies Thu 23-Jul-15 15:20:10

Er, the op's GP thinks she has ME/CFS. What's your reason for doubting that mrstweedie?

overthemill Thu 23-Jul-15 15:57:31

If the OPs GP has followed diagnostic criteria and told her that she meets the criteria except for length of illness there is no reason to disbelieve it. It's a physiological illness classed by WHO as neurological and most 'experts' now believe it to be an autoimmune illness kicked off by a bad virus of one kind or another.

Pacing yourself, OP, and trying to eat as well as you can is the way to manage your symptoms. Be wary of CBT and GET - read the NICE guidelines in CFS/ME and go back to your GP to get any medicines that may help ( vitamins etc). Do NOT 'push through'. Good luck

taptapioca Thu 23-Jul-15 16:17:30

I have cfs and remember the early days when it was all very overwhelming. You have been given really good advice already. Acceptance really is a massive thing you can do, which means you avoid pushing through (the worst thing you can do).

I have recently being doing a course at a clinic on the NHS and it has helped me so much.

One of the main thing I learnt would actually be to not sleep too much. If you can avoid early nights and lay ins then that could really help regulate your need to sleep. It sounds horrendous I know, but honestly has helped me and the others on the course massively.

taptapioca Thu 23-Jul-15 16:21:16

Oh and in terms of really practical things I find that breaking my day down into tiny but manageable tasks. When I was at my worst I would not have been able to manage a trip to Tesco, but would have been able to do online shopping paced over the day. You can keep returning to your basket.

Lower your standards for now - my heart breaks sometimes or my DC as I can't be the outdoorsy Mum I want to be but this can be temporary. We just have to accept it is our reality for now and hopefully we can gradually move on.

bassetgreyhound Thu 23-Jul-15 16:24:35

Mrstweedie this is what upsets me and why iv had to leave so many Facebook groups because of opinions like yours. when I had labyrinthitus my viral load was through the roof. My viral load has now been normal for 2 months and I no longer have labyrinthitus.
Thank you everyone else for your supportive messages. my doctor says I fit all the criteria malaise, headaches like none before, muscle and joint pain, chronic fatigue, ibs, brain fog.my mum has been a huge help and iv done alot of research online. I have recently started pacing and make sure I take regular proper rest twice a day, I lie on the sofa and listen to whale/waves music. My mum recognised all the symptoms I was getting as M.E as did my doctor before I even did. I'm not afraid of having M.E I have brilliant support even if it is over the phone. online shopping is a brilliant idea thank you. I hate feeling like I can't talk about it because 'you had a virus so your probably still tiered ' what I feel is way beyond tiered and if anything I struggle to sleep .

LittleLionHeart Thu 23-Jul-15 16:25:44

I try not to overly distinguish between ME and taking a while to get over a virus. Post viral fatigue covers both, really, and it hoed me to realise that some viruses cause lingering fatigue in everyone eg glandular fever.

I had ME for maybe four years in total, pretty severe at first and I would say I'm 100% recovered now save for being pathetically floored by colds and getting lots of them. My body is still changed and I get run down more easily but I am currently working full time and am totally fine.

Id say it's both physical and psychological, and accepting your real physical problems with pacing but simultaneously challenging the anxious thinking (I did this last time and it made me ill so I won't do it again sort of thing - more prevalent as you come out of it than the early days)

taptapioca Thu 23-Jul-15 16:30:08

I recognise all of your symptoms and you know exactly what you are talking about. One of the most frustrating parts of this condition is that it is so non-specific and you can't get the positive test result to wave in people's faces when they doubt you or think you are just tired. You are absolutely right, fatigue is nothing like tiredness (my DD bf every 2 hours day and night for 7 months - I know what tiredness feels like and this is much worse!)

bassetgreyhound Thu 23-Jul-15 16:39:57

I have medication in the way of cocodamol for the pain, zopiclone to help with my sleeping if I get really desperate, I'm on antidepressants already and was prescribed sumatriptan yesterday for my headaches just to trial it. Vitamin wise I'm taking magnesium, vitamin B complex, omega 3 fish oil , evening primrose oil. I'm sorry to hear others are going through this to. Im very lucky with my dogs there both old and arthritic so we have a potter over the field next to my house. I definitely want to try CBT but am reluctant about GET it didn't agree with my mum and iv read it can make your condition worse

PurpleDaisies Thu 23-Jul-15 16:40:43

what I feel is way beyond tired and if anything I struggle to sleep

The closest I could come to describing it properly was like really bad jet lag where you're exhausted but can't sleep and and feel totally off balance and foggy. It is horrible. A friend suggested taking up a sedentary hobby that wouldn't use up energy but to start with my concentration wasn't up to it.

GoodGollyMissMollyItsQuiet Thu 23-Jul-15 16:45:58

Fibromyalgia fits those symptoms too.I got a secondary diagnosis of it earlier this year.Boy it can make you feel unwell.

Pleasemrstweedie Thu 23-Jul-15 16:48:32

I’m always wary of the speed that the NHS moves to a CFS/ME diagnosis, since it happened to me. The diagnosis was given very easily and I was discharged by the consultant and left to fend for myself when I actually had a number of easily fixable conditions. I am now completely well, but CFS/ME is still the only diagnosis I have.

bassetgreyhound Thu 23-Jul-15 16:48:35

Thank you tap tap. It is a fatigue that I can't explain and I know I have M.E. my local M.E clinic will be southmead hospital in Bristol so I'm not sure what to expect. My employer has been less than understanding and I'm very worried about claiming for PIP wants diagnosed. my brain can't seem to handle forms. luckily housing wise my housing officer has been fantastic and helped me with all my hb claim forms. I'm hoping someone at the M.E centre will be able to help me with the PIP claim

gingerbiscuitandacuppatea Thu 23-Jul-15 16:54:55

LittleLionHeart, it doesn't sound like you are 100% recovered from your description. I am pleased you are as recovered as you are, but think you still need to be cautious not to do too much as quite often sufferers recover for a time then have relapses. I also disagree with you reference to a psychological aspect of the illness. I don't have anxious thoughts about things making me worse, frequently when I do things thinking it will be fine I find out that indeed it wasn't.
This is a misconception that is widely spread by psychologists and adopted by the NHS as it makes a much cheaper to treat profile than the true one of large changes to immune system, brain etc. A lot more research is coming out at the moment that is showing how significant the physical aspects of ME are, and disproving the pysch theories.

bassetgreyhound Thu 23-Jul-15 17:00:16

Purple that is a brilliant way of wording it. My dad came to visit me 2 weeks ago with his gf and my step brothers and couldn't believe the change in me. I found communicating difficult just from the shock of all the people round me as I was having a 'bad ' day . I then had malaise for 2 days just getting over a 3 hour visit.
I appreciate maybe sometimes M.E maybe diagnosed to often? But not only does it run in my family my other sister has pots it's normally a virus that causes it which was in my case what happened

sanfairyanne Thu 23-Jul-15 17:00:41

all i'd say is get copies of all your blood tests and check
no thyroid antibodies
tsh was well under 2 and t4 was high in range
ferritin was over 50
b12 was over 500

if it is related to the virus, post viral fatigue can take a while to recover from. lots of rest and pacing is important - dont push yourself beyond your limits

QuietNinjaTardis Thu 23-Jul-15 17:01:21

Does anyone mind answering my question? If you have cfs/me can you still go out for dinner and drinks? My sil boyfriend has been diagnosed with cfs as he's always tired (he has no pain though) and he's too exhausted to read his work emails (been signed off for several months now on full pay) but has recently started playing computer games. He will also go out for dinner and drinks with sil and friends and doesn't seem overly concerned with being diagnosed with what I thought was a very debilitating illness. My godmother had me and she was in a wheelchair because she could barely walk so I just wonder how others get on? Sorry if I sound suspicious of him. But I'm not convinced when everything I know about it makes it difficult to do thinga and he can still go out drinking. Sorry for hijack

bassetgreyhound Thu 23-Jul-15 17:07:41

Quiteninjas this is all new to me but I can hardly handle a trip to tesco which is on my doorstep there is no way I could possibly go out drinking / socialising I'd feel overwhelmed and be bed bound for days

PurpleDaisies Thu 23-Jul-15 17:08:01

Yes you can quiet, if you pace properly or are prepared to pay for it later. This has lead to arguments with friends who haven't understood I've rested all day and planned a light day afterwards so I could come to things I really didn't want to miss. Sometimes I felt dreadful afterwards but I was desperately trying to cling on to being "normal" and keep on pushing through.

Just because someone doesn't look ill when you see them it doesn't mean they aren't feeling exhausted when you aren't around.

QuietNinjaTardis Thu 23-Jul-15 17:16:27

That's true purple and I certainly don't want to be suspicious of him but I had more of a view that cfs was like bassetts experience. I just think going out multiple times a week when you can't even look at your email isn't right but I stand corrected. im sorry your friends aren't more understanding, I will try to be with sil bf.

bassetgreyhound Thu 23-Jul-15 17:18:19

sanfairy my b12 and thiroid were all fine we even went as far as ruling out HIV, hepatitis etc everything that had to be checked before s referal has been tested and is all normal. my doctor is brilliant and has checked over everything which could possibly give similar symptoms all my blood work is fine she's been more than thorough

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