[Anonymous]

(Original post by Foo.mp3)
Had the following (very rarely all at the same time) over the years:

Physical Symptoms

• Muscle weakness
• Irritable bowel syndrome
• Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
• Headaches
• Dryness of mucous membranes (throat, mouth, eyes)
• Uncomfortable or frequent urination

Cognitive Symptoms

• Poor concentration
• 'Foggy' thinking
• Poor memory

Nervous Disorders

• Interrupted sleep patterns
• Mood swings, anxiety

Realised something wasn't right when I started getting colds in winter that would linger increasingly and began to feel fatigue at around the age of 16/17

Had a bad viral infection at 18 (later found to be EBV in blood tests) and went further downhill. Been up and down ever since

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. thanks for replying.

[princesstini]

I've recently been diagnosed with CFS/ME and started attending sessions at the hospital but everyone I've met so far is aged between Late 30s - Late 80s!
I'm 21 so it's a completely different thing to be dealing with at this age to being a lot older!


This was posted from The Student Room's iPhone/iPad App

[Foo.mp3]

(Original post by 03hope03)
anyone have any good tips for dealing with pain?

(Original post by koistyjayne)
I get a deep tissue massage and that's really helped with my pain!

(Original post by zoooey)
I suffered severe pain in my stomach

Have any of y'all heard about this Oxalates business? I've only just had it put under my nose so to speak but if you suffer from Fibromyalgia or pains + M.E. then it's got to be worth investigating!

An article on Oxalates and chronic health disorders

[SillyMilly]

(Original post by princesstini)
I've recently been diagnosed with CFS/ME and started attending sessions at the hospital but everyone I've met so far is aged between Late 30s - Late 80s!
I'm 21 so it's a completely different thing to be dealing with at this age to being a lot older!


This was posted from The Student Room's iPhone/iPad App

I contacted M.E when I was 14 and I greatly sympathise with you being young its hard nobody seems to understand your to tired to go out its not because your lazy

[fredscarecrow]

(Original post by princesstini)
I've recently been diagnosed with CFS/ME and started attending sessions at the hospital but everyone I've met so far is aged between Late 30s - Late 80s!
I'm 21 so it's a completely different thing to be dealing with at this age to being a lot older!


This was posted from The Student Room's iPhone/iPad App

I had that issue - all the information I was given was aimed towards people with kids, or people in work/with a partner who could support them. None of it really fit with a 22 doing a masters who was looking for work and who had to support herself! I had 1 to 1 sessions because i was moving awaybefore the group sessions were to start and whilst i was being taught about pacing etc it was my exam/deadlines. Even my therapist was at a loss how i should pace with deadlines looming and when i had classes all day for two days week and then nothing for the other 5. In the end she just taught me the techniques to implement when i could and taught me some relaxation stuff and worked out my baseline. Ive had M.E. Since I was about 14 but was only diagnosed properly this year. Ive managed to do gcses, alevels, BA and an MSc because ive learnt how to sort of look after myself but the information out there for our age is absolutely useless unless youe prepared to take a couple of years out of your life to recover. Some people choose to or have to if theyre severe enough, but emotionally it just wasnt an option for me and my therapist recognised that keeping myself active was essential for staving off depression but i know she wasnt happy about me pushing myself so hard. The literature on the subject just doesnt take it into account..

[Foo.mp3]

(Original post by fredscarecrow)
The literature on the subject just doesnt take it into account..

I guess that's because with M.E. you have to watch how much gas you've got in the tank and the research suggests that pacing > graded activity/doing whatever's required

Also the fastest sustainable route to recovery is typically to reduce the stressors on the immune system, give it time to recover and repair, and then pace yourself back to a relatively normal/functional lifestyle

I have a few friends who have CFS/M.E, one of whom doesn't seem sure she has CFS but she has most of the signs as far as I'm concerned, who all try to just get on with things and it just seems to be making them more ill/putting off a future recovery date I understand they have their reasons (unsupportive/threatening family, running out of time to complete studies) but it's still sad to see, particularly the more I learn about the nature of this illness from my research

[SuperCat007]

I thought I'd add a bit in here. I was diagnosed in 2007 when I was 17 after glandular fever and a liver infection. I have since been re-diagnosed with fibromyalgia because my symptoms fit a little more with that. I read a little further up, although I can't find it right now that someone wrote that some people choose to be ill with CFS/M.E and others have to get on with it and I have to say that I feel slightly offended by that comment and I think that if you can just get on with every day activities despite the CFS symptoms then your condition really isn't that bad at all. CFS/M.E has taken 6 years of my life which I will never get back. I have done things on and off, but mostly I have had to just accept it and stop doing anything and everything. It has been awful, to whoever wrote that I hope you count yourself very lucky that you feel you have to get on with life despite your symptoms because I know I and many others wouldn't have been able to due to sheer exhaustion and pain.

I am very lucky and for the last year or so it seems to be in remission. I still get ill every September around the time when my glandular fever first hit, and I get very tired easily and am still very pale but I have been able to take up sports and do more time at work and make friends. Hopefully I am finally going to be able to go to uni in September, something which had eluded me for so long because I couldn't complete the qualifications the universities ask for.

Good luck to those who have it and please try to give yourself time to get through it. I am almost back to 'normal' now, but as I said above it meant I had to admit to it and give myself the time I needed.

[Foo.mp3]

My latest thoughts on CFS/M.E. and underlying processes are available here

(Original post by SuperCat007)
I have since been re-diagnosed with fibromyalgia because my symptoms fit a little more with that

Have you heard about the link between fibro and oxalates?

If not, based upon anecdotal articles like this, as well as one or two journal articles I have seen, I would strongly urge you to look into it and consider trying a low oxalate diet for a few weeks

[Quiet _One86]

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

[missybct]

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

[Quiet _One86]

(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. 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.

[Quiet _One86]

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.

[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.

[Quiet _One86]

(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.

[oohabee]

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.

[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.

[Quiet _One86]

(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.

[**R**]

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!

[koistyjayne]

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!! :/

[Quiet _One86]

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.