Do we all get slowly worse over the years?

[coxy]

Hi everyone,

I read through quite a few of the threads & i so often read, '"i did this when i wasn't so ill" or "i used to do that when i wasn't so severly affected" etc etc. This gives me the impression that over the years a fair number of you seemed to have got worse, am i correct?

My 16yr old daughter has been ill for half of her life now & recently she has definately been struggling more. She has this problem i've spoken about before when she suddenly lost over 3st in weight over a year, her nausea is a real problem at the moment (original virus that triggered the ME was a sickness
one). Her period pains have got so bad she has to go in the bath in the middle of the night to try and help it a bit. She seems to have moved backwards, even though we have done everything in our power to give her body all the rest it may need i.e no school.

Or are there many of you who are getting better, if sdo after how many years?

 

[helsbells]

I got worse but it was it went in stages, lots of symptoms plus infections NO brain fog and some small excercise tolerence (shopping and hanging out), infections reached a chreshendo, then housebound, brain fog and no more infections, then after a few more years, altho i recovered some V small walking capacity but on the whole things worse but by becoming much more complicated this time, MCS becomes severe, develop Interstitial cystitis, chronic reflux, diagnosed with Ehelrs danlos, POTs and dysautonomia etc. I do know a woman who improved a little but I don't think she had ME in the first place whereas i know from the infectious route plus syptoms I do. That is the problem without a proper deffintion, it drives me nuts when people have PVFS for 18 months and say I had that and got better usually by implying they "refused to let it beat them" or other such when I really want to say, it didn't beat you because you didn't have it.

 

[Wonko]

things definately change - overall I cope much better than I used to and dont have severe symptoms any more - but I wouldnt say I was getting better (or worse) - I've just got better at managing and have limited my activities to those which I know I can handle

on average physically I am slightly worse than even a couple of years ago - but that could be down to ageing - I dont know

I've been told mentally I am not as functional as a few years ago - I have no real way of checkign this as most of the time when not experiencing definate cog issues mental performance seems adequate - I do kn ow that it's a lot better than a decade ago when I was essentially non functional cog wise

so i dont know which way it's going - it's up and down, things change, I react to the the change, other things change - cant say if I'm getting better or worse generally

sorry

 

[paddygirl]

The young ones

Hi Coxy,

I hate to hear of young people with this illness, it really breaks my heart.

I was on Prohealth last night and a Dr Pelegrino seems to have the opinion that you are right, assuming I am reading the article correctly.

One thing you said stood out for me, about your daughters periods.

I was a regular 'fainter' when I still had my periods, frequently having to lie down in public toilets or the back room at work when I got bad, although this wasn't the case every month. I would have to lie down for a couple of hours until I threw up and then felt better. Holidays etc were planned around my cycle.

I was eventually diagnosed with Endometriosis, which has a high incidence for women with ME/CFS.

My illness 'progression' was in order, severe backache, knee pain to the point of surgery, chronic allergies. endometriosis, FM and then ME.

I once asked my doctor if there was a link, he didn't agree. But it seemed odd to me that most of these things come from a wonky immune system.

I eventually had keyhole Laser surgery for the Endometriosis, which helped, as did the eventual end of my cycle. I used to dread my periods as everything hurt, especially my legs. Another option is to take the pill constantly, having few periods. The damage is done in Endo when bleeding takes place outside the womb, leaving painful lesions. I wasn't happy about the pill option, but I was lucky in that menopause was coming up. A good Gyny might help, and if you can, have a look at Dr Christine Northrups books, most libraries have them.

I use fresh ginger slices in hot water for nausea, just sip and keep refilling.

My 31 year old daughter has shown signs of ME, as in irritable bowel, endo and odd random pains. Pretty much where I was at her age. I haven't said anything to her yet. I'm just hoping the science will resolve before she gets worse.

I hate to think that this is progressive, but for me it is. I have found lately that my walk is very bad, especially when I overdo it. Long delays at work (in an airport) can leave me limping and feeling numb on my left side especially.

One thing I've noticed, women I know who don't work and can minimize their stress don't seem to have such a downward slide. So maybe you are doing the right thing with school. I know it's true that I overdid it for years, as I was a single mum on a low wage and had more than one job.

I met Dr Peterson at the London conference. I had hooked up with a lovely English lady whose 17 year old daughter had ME, and we asked for advice. He said 'stop everything for at least a year'. Not everyone can do that I know, especially those with responsibilities.

Have a look at masscfids,org and njcfsa.org. Both sites have great info and links for young people.
In fact, I think masscfids had a recent seminar on ME/CFS and schooling.

Hearing stories like your daughters enrages me in context of the absolute contempt this illness is held in by the CDC and the Wesseley school.

My thoughts are with you and your daughter, she is lucky to have you.