Chronic Fatigue Syndrome/M.E. Society

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Quiet _One86
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#181
Report 8 years ago
#181
Hello, I got diagnosed earlier this year, and it has affected my job, my life. I had a bad spell last week, where my body didn't respond to anything it wanted to. It was so draining, to even get up out of bed when the ambulance crew came to my house. I had suffered an episode I hadn't experienced before. I was so scared, my migraine had kicked in, and the nausea that came with was unbearable. That said, I was exhausted for days after. My body trembling, my hearing and vision were so hyper sensitive for days after. Its so annoying for someone who should be getting out, socialising and being able to have fun is stuck inside, resting, pacing and trying to live everyday as normally as possibe. I am currently off work since last weeks episode, and I am so angry with it all. I have been put forward for an urgent scan of my brain to check nothing abnormal is going on, neurologist please find something to sort this problem out.
I did some research this week and linking my symptoms to the CFS; its possible I have Autonomic Dysfunction to add to my list of problems cos most of them I relate to. http://heavenleigh412-ivil.tripod.com/id23.html
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missybct
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#182
Report 8 years ago
#182
I've had M.E/CFS since I was 15, so 12 years, but only got diagnosed in 2009. I've been up and down in this time, never fully recovering, and today I feel absolutely dreadful.

I'm walking to college each day and it's really draining me, the bottom of my legs/calves are in constant searing pain and it's agony. Is it worth going for a massage at the college? Because I have to walk home I don't want to make things worse :rolleyes:
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Quiet _One86
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#183
Report 8 years ago
#183
(Original post by Anonymous)
OMG i have all these symptoms, every one of them, but i thought it was because of depression. maybe i should get it checked out. but i'm probably being paranoid. :rolleyes: thanks for replying.
be sure to ask for a blood test from the GP, as they have to come back normal results and then they can refer you to ME/CFS specialist.
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Quiet _One86
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#184
Report 8 years ago
#184
Having suffered from CFS since April and maybe before diagnosis. I felt I couldn't cope with a full day at work, and now having to get time off work for bed rest and learn to pace. I had a seriously bad reaction to my condition last week, and it affected my mobility so much I couldn't get out of bed, my head was pounding (migraine) and abdominal pains. My skin was crawling and felt like my body had been run over. That said, I have since found this website which lists some things I also have alongside my CFS symptoms http://heavenleigh412-ivil.tripod.com/id23.html I have really had quite some scares with this. I hope that the drs work something out that helps my employment as I've missed so much work. All triggered by have my gallbladder out and the general anthestetic.
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glousck
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#185
Report 8 years ago
#185
I was wondering if anyone here would be able to give me some advice as I have a family member who is diagnosed with ME/CFS last year. They don't have trouble falling asleep however for a few months now they have woken up several times during the night which has meant they haven't got enough deep sleep. This is quite sad for me to see because they had started to make a recovery before this began. If anyone has any information or advice (apart from sleeping tablets) I'd be very grateful.
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Quiet _One86
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#186
Report 8 years ago
#186
(Original post by glousck)
I was wondering if anyone here would be able to give me some advice as I have a family member who is diagnosed with ME/CFS last year. They don't have trouble falling asleep however for a few months now they have woken up several times during the night which has meant they haven't got enough deep sleep. This is quite sad for me to see because they had started to make a recovery before this began. If anyone has any information or advice (apart from sleeping tablets) I'd be very grateful.
Set up a good bedroom routine..I find getting the room warm, having a hot bath, and find something relaxing to do before bedtime. Say give an hour, no computers/tv or phones as this can stimulate the brain, and then listen to some chilled music. if they still can't sleep, have them do something else away from the bed that stops the association of not being able to sleep until drowsy and then send them straight to bed, keeping the lighting to a minimum.
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oohabee
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#187
Report 8 years ago
#187
Hi there, i've had M.E for three years now and really struggled with getting enough deep sleep. Despite bath, hot milk, reading, dimmed lighting i still was watching the ceiling almost all night. The doctor eventually suggested melatonin, as i didn't want harsh sleeping pills from a pharmacy. In America i believe it's available over the counter. But without any medical knowledge i can only say that it has worked for me and is the hormone associated with your body winding down in varying light, relating to how much harder it is to get out of bed in the winter and harder to fall asleep at night in summer. Hope this helps.
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oohabee
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#188
Report 8 years ago
#188
I was also wondering if anybody would know of any kind of core exercises that would build strength/fitness for someone M.E? I found swimming too draining, i really wnjoy riding but find i need to build up as its such an intensive workout for me. Would pilates/yoga be beneficial? Any replies gratefully recieved as i'd like to compete again next year and look good in my christmas dance dress.
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Quiet _One86
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#189
Report 8 years ago
#189
(Original post by oohabee)
I was also wondering if anybody would know of any kind of core exercises that would build strength/fitness for someone M.E? I found swimming too draining, i really wnjoy riding but find i need to build up as its such an intensive workout for me. Would pilates/yoga be beneficial? Any replies gratefully recieved as i'd like to compete again next year and look good in my christmas dance dress.
Perhaps that Pilates would be good, its slowly building up a stamina and inner strength, go at your own pace and can do it from home if you get tired.

I am thinking of doing it also. But if you haven't exercised for a while, Yoga or Tai Cai might be a better option.

For people with FMS and ME/CFS, Tai Chi can be a way to get your body moving, increase your energy, and promote flexibility and strength. Even though it is gentle exercise, remember to start slowly and lengthen your workouts gradually or add a second short session to your day. Instructors say that everyone can do Tai Chi, in spite of movement limitations, because there's no "right way" to do it.
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**R**
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#190
Report 8 years ago
#190
Hello! I was just wondering how people are managing at university with M.E ? How much does it impact and how do you cope and manage to juggle the two?

Right now I am finding university impossible (actually everyday life things let alone studying and working). And I am considering dropping out completely. But I have already completed 3 yrs and am now in my final year. So to leave so close to the end is a bit heartbreaking and so difficult to make the decision to walk away and waste those long hard 3 yr of work!

I have just recently been diagnosed with M.E, even though I have had it more than a year now. Last October was when I first got sick, out of the blue, no virus no nothing. By February, after months of being bedbound, I finally went to my tutor and I got some time off, I withdrew temporarily for the rest of academic year. That should have been my final year at uni, but gradually I got better and by end of summer I felt about 85-90% my old self again, and in September just gone I re-enrolled to restart my final year from scratch.

My course is an NHS course, and half my time is spent on clinical placement. It has been the clinical placement aspect that has destroyed me again. Because pacing myself and not overdoiong has proved impossible. Each week that passed Ive got worse and worse, and now 4 weeks in, I've completely relapsed again. Im back to where I was this time last year, endless doctors visits and tests, and not being to do anything anymore.

I'm at a complete lost right now as to what to do. Any advise or tips on how others deal and balance to two would be amazing right now.

Thanks and sorry for such a long post!
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koistyjayne
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#191
Report 8 years ago
#191
I'm finally going to a CFS service tomorrow and I'm actually a little nervous! I'm 21, and from what I've read from other people on this thread, the group sessions provided by these services aren't really suitable for people my age, which sounds pretty rubbish! I'm also nervous because since becoming ill with CFS I get anxiety because of my symptoms, and I have to travel for nearly an hour to get to this group session tomorrow to be with a bunch of people I don't know (I have no idea how many people will be in the group), who probably won't be my age!
I never had any problems with anxiety before I started getting ill but over the last year and half its been getting worse. I just hope this group session is actually some help to me and that the anxiety won't take over!! :/
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Quiet _One86
Badges: 16
#192
Report 8 years ago
#192
Hey, my advice is failing me tonight and for the last few weeks. I have struggled getting to sleep and its 2/3am before I drift but tonight nothing- I took my amitriptyline and now nothing. Was gonna take zopiclone but don't know if its too late now. I feel shaken up finding a lump yday. On antibiotics but don't know if they're gonna work. Chest pains and restless. Not good combination.
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sosotalk
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#193
Report 8 years ago
#193
I've taken to napping during the day (yet again!) The university doctor rang me up yesterday and said that she strongly recommends that I stop napping. I know that, for me personally, napping doesn't help get rid of the fatigue but it's just sooo hard to stay awake all day!

Does anyone have any tips for staying awake?

At the moment I'm just refraining from sitting on my bed outside of sleep hours.
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Quiet _One86
Badges: 16
#194
Report 8 years ago
#194
Napping could be lack of oxygen, take a short walk near your home and then come back. Hopefully that will keep your body working a form of exercise and keep your body awake. Failing that sitting next to a window with a gentle cool breeze to wak up the body. Hopefully that helps. Don't push yourself to start with. But might help a little. Ideally go with someone to help you back home if you over do it.
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claireyfairey94
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#195
Report 8 years ago
#195
This is a good thread :-)

I got diagnosed with M.E. 2 years ago, at the end of my first year of uni. I've always been tired, lacked energy and had pains but put them down to also having diabetes, actually the one symptom I never linked to anything but thought was odd was leg twitching!

I had chest pains which I put down to being on iron tablets too, so as you can see I had 'reasoning' behind things but they weren't actually true! My Dr was good enough to see past everything and diagnose me, the main thing were the headaches which didn't go after being treated for anemia, only my waking up headaches did! I have had headaches for 2 weeks each day!

Before I was diagnosed about 2 years previous I used to come home from college at 6 and be in bed by 9... I thought I was just tired from long days but then now I look back and see that stressing because I was too tired to put things away before bed or crying cause I couldn't wash my hair - it wasn't normal. I only had college 2.5 days a week so really it was minimal and the change from this to uni, mainly doing everything for myself i.e. cooking, cleaning, shopping, was certainly the last straw.

I cope with it okay, sometimes i'm in pain or have headaches but I just put up with it. It does get to a point where I have too much uni work and simple things like washing/eating properly go out the window which is clearly a problem especially needing a balanced diet for my diabetes. I manage to go out clubbing, but it will knock me out for a couple days afterwards with pain and fatigue. I usually walk to town a couple of times a week though often get bus back and obviously to uni which is 4 times a week, currently having issues with group work as I don't like to go in when I don't need to :\. Brain fog can be a massive thiing, it hit me hard at the end of my exams last year I totally panicked as I still had 3 pieces of work to do! Luckily I got extension but through my dr so it cost me - but now i'm in touch with the disability office they say they can help there.

I have Cognitive Behavioural Therapy at the moment, I find the time management, planning things helpful but i'm not sure about all of it! It has helped me sort my sleep pattern which definitely helps personally I think. At uni i'm supposed to be getting an academic mentor which might really help, not sure when though :\ I've just got eligibility for DSA as well, not sure what i'll get from that.

If anything I feel as though i've been like this throughout my late teen years so everything i've done has been minimal anyway. I never got to party loads then have it taken away from me etc, you get what I mean... But I do look back at how I used to be before GCSE times like dancing/music school/guiding/volunteering and what I do now is limited. My big problem is socialising, I really feel i've missed out especially at uni, I just don't have as many friends as I see my friends back home do That gets me down.
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Quiet _One86
Badges: 16
#196
Report 8 years ago
#196
Sounds like you've come to the right place Claire. Hopefully with the pain management and use of CBT it all helps manage the ME symptoms and general discomfort that it brings. Hopefully we can get through ME together and find a way forward from the heartache and pain that comes with having this condition. I am yet to explore the DSA route, which way did you go through to get it? I am also gonna go through the Perscription Exception thing for getting my meds free if I am on a regular perscription for my amitriptyline.
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medicaldude
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#197
Report 8 years ago
#197
just to ask, how do you know it is not normal tiredness, or mentally induced tiredness i.e depression, or diet , or perhaps the age where you grow i.e teenage years.

Is there a solid way to diagnose this?

i feel exhausted for the first few hours of the morning, like absolutely exhausted as i brush my teeth and am awake for the first few hours.

Then i feel more energetic during the middle-later part
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Quiet _One86
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#198
Report 8 years ago
#198
I think ME/CFS is something that is different from any tiredness I've experienced that it hurts my entire body sometimes and feels like my legs are gonna buckle, and this is after sleeping usually, and feels worse than Flu or anything similar. I guess depression was a part of when I thought something was wrong because thats just drowsy and low, not tired or craving more sleep after a nights sleep. I was of poor health for a year before I got diagnosed but alot of the boxes for CFS/ME I was ticking off and there isn't another condition I believe similar to those symptoms. Normal blood tests but without the white blood cells checked I guess I am not a 100% certain but that will be a request I make to the GP. Also to have B6 shots to help boost my stamina. I feel tired all day, not really awake unless I have a up day and that is short lived as its 2 days after that I feel worn down and low..fatigued and brain fog/confused/hard to concentrate. Just talk to different doctors and review on specialised sites or centres to help you get the answers you look for. I think my triggers were condensed stress and poor health (gallstone/depression/infections). Good luck x
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Jamie
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#199
Report 8 years ago
#199
"Normal blood tests but without the white blood cells checked I guess I am not a 100% certain but that will be a request I make to the GP. Also to have B6 shots to help boost my stamina."

Unlikely they didn''t do an FBC if doing other bloods, so one would suspect normal white cells.
I can't remember ever giving someone a single B6 shot. Its highly bioavailable and in good amounts in most food. One might suggest a daily banana.
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niamh suzannah
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#200
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#200
My brother has M.E. There was a time when any time not spent on resting was spent on playing video games, and it was basically his dream life. There was a year when he couldn't leave the house, but he's been building up stamina and can do a 20-minute walk each day (which is probably more than I do!) If you've been diagnosed I advise that you apply for Disability Living Allowance. Also around Christmas the anticipation brings a lot of stress, but you can lessen the impact by recognising that you might feel worse.
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