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Hi am holli 27 years old I just got told I had m.e after a year off text for everything from chrones to hemocromitosis. It started about a year ago when was constantly exhausted even just going for a shower was tiring. I finally went to my g.p that's when he referee me for all the test they all came back clear. I am so exhausted all the time I can really enjoy anything because I don't have the energy. I'm in constant pain my back neck hips are always achy and lately started to suffer from head aches. It's very hard as I was always very outgoing I fone crossfit football and Thai boxing. Now jusy getting through a work day is an accomplishment. It would be great to hear how it effects other sufferers as I don't know much about the disease
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I know the feeling. I got diagnosed with ME (I hate the term CFS because people often assume its psychological) in November last year at the age 17, i was doing heavy Jeet Kune Do training and getting top grades in class. Life was good.
All of a sudden a bus hit me, i lost 20KG's, developed severe whole body conditions. I had severe IBS, muscle pains, joint pains, mental fog, GERD, debilitating fatigue, etc. It all seemed so hopeless, everything was gone.
It took a long time to sort my self out, i lost control and had fix it. Around June i started back doing my Jeet Kune Do spiritual exercises, expanding my stomach and eating properly and stopped worrying because even if i am physically ill i still had my brain.
Now i can say i am starting to feel better, not everyone recovers and i am going to see a VRS ( Victorian Rehabilitation Specialist) who helps recovery from things such as ME.
The only advice i can offer is stay positive, you will always get better even if it takes time and its a journey that teaches you a lot about yourself. Don't push yourself, don't listen to others around you. When you have ME you just simply can't do things you used to be able to do and pushing yourself just causes worse withdrawals. Take everything one step at a time.
I started an online university course under a special circumstance plan in herpetology, i may have been house bound for almost a year but i could still think. Try to find a hobby or activity that requires minimal effort to take your mind off anxiety and thoughts around ME. Video games and reading worked for me.
Thanks it great to hear from someone who knows how it feels and is started to get back to a normal life as possible it gives me hope that I won't always feel like this.
Have you tried any of the meds that can be given for it?
So sorry to hear you have this cruel and debilitating disease. I have had ME for around 21 years . I am much older than you ! I had to take ill health retirement from nursing . broke my heart and still does. I am in constant pain ,nerve, muscle ,joint ,but do not tolerate pain medication. Have a hot water permanently on my back /hip . I never have any refreshing sleep. Always fatigued and quickly exhausted and often breathless . have various food intolerances . gluten, wheat, dairy free. Lot of cognitive issues. My short-term memory is shot . poor concentration brain fog .Feel sick practically all the time. Awful gastro reflux . Get dizzy sometimes full blown Vertigo. IBS And other things. I have been housebound for years .Nothing has really helped . reiki helps me relax . but nothing more . I have gradually got worse over the years . some people have found improvement with some things they have tried. And over time some reach some improvement naturally . Graded exercise programmes have proven to do more harm than good in many cases. But you will often hear it is a recommended treatment. Especially from the mouths of GPs .
There are varying degrees of ME . I am moderate to severe. Some are mild. Some mild to moderate. Some moderate.And around 25% are so severely affected they are confined to bed and unable to do anything .
By nature I am a positive person . I am very very restricted but I try to do what I can in my house. Crafting is very popular with people with ME. I like to make cards and other crafty things doing a bit at a time. I try to pace myself with periods of rest between activities. The key is to listen to your body. Don't push yourself too much either physically or mentally. Have to learn to be selfish o some extent as your own wellbeing comes first. Pushing yourself too much ,and too quickly, can result in a big crash. Stress can have very negative effects too.
I do feel it is important to have something to focus on. I hope in time you can start to feel better. Working with this disease does become impossible for many as it did with me. Take care
Hello Janet, I hope you don't mind me commenting on this but I have found reading your post so useful. I am at the point of being referred to a specialist ME clinic as have been off work in total this year more than 50% of the time with symptoms and episodes getting worse each time. I'm 27. It's been alot to manage to have to come to terms with as I was just getting a hold on my career and refused to give in to the fatigue and symptoms for months which in all honesty made me worse.
Arrghhhh just wrote a reply and it has disappeared !
Hi again lexilou so pleased my words help a little. Is good to help if I can .
Can't remember what I was writing now. I did see your post on here last night but was too done in to respond. Also I am having a bad carpal tunnel flare up and is very painful to type on PC and tap on tablet.
It sounds like you are running yourself down . you may need to consider going on sick leave for a longer period all at once Rather than days or a week here and there. Your body needs time for some recovery. And unfortunately it won't happen in short bursts. I carried on working for as long as I could . well until I virtually collapsed one day at work.
A colleague came to find me in the office and she thought I was dead ! I must have fallen asleep during my break and she was shouting at me but I didn't hear her . she had to shake me. After that I took a couple of weeks off. I tried three times tour return to work . but each time it didn't go well. She always said she rathered having cancer than whatever was wrong with me . at least she knew what was a long and what could and had to be done about it.
I was off sick for a year. As was the same colleague . she had breast cancer. The irony being she always looked so well and was active after surgery and during treatment . but I looked dreadful unable to do hardly anything. After a year she returned to work free of cancer and very well. I was no better . infact much worse and had no option but to take ill health retirement in my late 30s. She had nine years of good health then the cancer returned with a vengeance. She sadly died after two years of various treatments.
I reckon we must be made of tough stuff as we endure so much with this disease yet don't really know why. Or what damage we might be doing to our bodies when we push it too hard. Even now I push myself too much , just around the house. But I am stubborn !! And if I don't try I don't know . I should by now as I always end up wiped out. Frustrating. But I am not negative about it.
It is very hard to give in. But it is the only way when your body just can't take anymore. Don't hesitate ask any questions or share your experience. Take care x
Hi there Janet, thanks for your reply.
I attempted to go into work Wednesday on an altered hours/phased return however could not cope with the level of concentration required so managed 4 hours then had to come home and havent been back since. On the Thursday I couldnt wake up and spent the entire day in bed and have pretty much been the same since. I'd have this previously and I would simply push through it and down coffee's and energy drinks to keep myself going and completely ignored it all as I too am extremely stubborn and will not give in easily at all to anything. I'm so sorry to hear about your friend, sounds as though you were close.
Normally i live on my own however I've had to move back with mum as could not cope and was finding my spirits were getting so low it was dangerous. (thus am currently on antidepressents) All my friends are so social and I was always going out with them, went to the gym4/5 times a week, was a key member of staff in my team at work who was organizing our Xmas do, and had organised and managed previous events and business ventures.I'm also extremely compassionate and cursed with the fact I care an awful lot how others feel and I can't turn it off, and I think it's just got too much also, mentally bearing others wo's and struggles.
I've go another GPs appointment Tuesday as they ave accepted it might be M.E but want to 'review' the situation. I have neutropenia (low white blood count) also which im actively monitored at the hospital however they've been unable to find a cause or explanation for this for the past year and a half. I do hope you've had a good day and your wrists are not too bad.
Does all sound like you need to take continual time off now. There is no point pushing yourself so hard. And drinking lots of coffee and energy drinks will not help . I avoid anything with caffeine in it. It is a drug after all.
I have a tendency with neutropenia too. It was thought to be due to gabapentin. Low platelets too. But all the drugs I am on can do both things. A heart med and aspirin and omeprazole for gastro reflux. I had read though of others with ME having neutropenia too. But drs I have told don't appeared interested .
I am pleased you are staying with your mum. At least you have support and not struggling alone. I know not been the active , social person you have been will be getting you down. Try not to worry about it. Just try to concentrate on yourself right now. I hate the phrase but life does go on for all the people in your social and work circles. You probably feel like your life had stopped. I know that feeling all too well. But it honestly hasn't. I have a couple of friends, both with chronic Heath issues. Not ME. I am constantly supporting them over the phone . especially one of them.!! Is exhausting with her at times but I know she appreciates it.
Think about what you want to ask your Dr and write it down to remind you. Have they considered the drug you are on could be causing the neutropenia? Might just be worth a mention. Who do you see at the hospital ? Which speciality?
Don't hesitate to write . I will always answer when I see it . good luck at the DR's. Let us know how you get on . take care x
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