3.00 am in the morning I'm in pain

[koohpi]

I'm 69 years old, I've had Fibro since 1990, I had to give up work in 1998, (never claimed benefits) kept completely by my Wife and family, I stopped taking prescription drugs, they RUN FOR CANCER, but does anybody WALK for us, to all the young Fibro's I cry for you. xx

[Reykua]

Hi Koohpi,

You have certainly given me some food for thought.

Firstly, well done for surviving all this time with this horrible condition.

Secondly, may I ask how you are coping if you're not taking any prescription drugs? Are you using any natural remedies and if so, please do share the details with us.

Lastly, I think we may have to join with the ME/CFS groups and organise some fundraising events that will help fund a search for some sort of cure.

In truth, I think the main reason why we don't get much of a look in fundraising wise is because it's very much an 'Invisible' condition and not considered to be 'life limiting or life threatening'. I would personal argue that it does actually completely limit your quality of life but unfortunately there's not as much sympathy for that.

Wishing you the very best going forward and hope to hear again from you soon.

[honor1a]

Hi Koohpl,

I have got to congratulate you, in coping with Fibro without medication or benefits, my situation is:- I'm 55 suffered Fibro since 1994, worked on until 2002 when it became to unbearable, I was on anti inflammatory medication while I worked on, which I stopped taking after stopping work, to later discover it has now been found to cause strokes & heart attacks!!! So I've not taken that since 2002, I unfortunately have pernicious anaemia & need B12 injections every 8 weeks & also an underactive thyroid which I take thyroxine byt other than that the strongest thing I take fir my Fibro is paracetamol on my worst days only, I often wonder if medications taken pre suffering Fibro has in fact caused it, I am on my own & unfortunately have no opinion but to claim benefits, it goes against the grain for me to do this, it is not helped by the lazy benefit taking layabouts, as I feel because our condition is not visible to the naked eye, it is believed by many that we come under the tag of "benefit scroungers" I do not like being in receipt of benefits, I always believed in you work for what you get. I wish you well & hope you have more better days than not. Take care Honor x

[gracesgrandma]

Hi koohpi I really feel for you. When the demons of the night get you it is hard to shake them off as I am sure many on this site understand. Night time for many is the worst when the elusive sleep slips us by. I dream (no pun intended) of the day they firstly recognise it for the devastating and life changing condition it is and secondly have a definitive cure or medication that actually works, doesn't poison your system or having to take further mediation because the first one has a side affect, so on and so forth. I am like you in that I do not/am unable to take medication. I personally have found limiting my life, to the point some days when I think why bother, but carry on anyway. It sounds like you have a wonderful support system behind you :o)

Take care x

[ailsamary]

I took medication too work, and don't regret it at all. It's the only way I could manage at all. There are a lot of things out there that are a risk for cancer -other people smoking and talcum powder for two.

People are different and whilst I really do congratulate you on being able to cope without meds-and many do. There are also those that do need to take them. It does not make them any lesser of a person nor more susceptible to pain; but just differently affected by the fibro, I believe that there actually are subgroups of fibro

[B2WC]

Dear Koohpii,

I tend not to reply just reading all the messages what our members share here, but reading yours, I think personally agree with you.., if you can avoid taking medication, then brilliant, but some people unable to cope without it, I used to work for one of the biggest Pharmaceutical company (globally) and selling anti depression drugs as well as others, I always advised my customers (the Health Care Professionals) to ask the patients first of all to change their life style :1. Diet 2. Eating the right food 3. Exercise, but if that still not helping them, there where I suggested for them to offer the drugs I was selling. Again in term of cancer because like others were saying its life threatening, as with FM/ME/MS/CFS eventhough we suffering even terrible...there seems not a lot of people aware of it..so perhaps it is our duty to try to raise awareness by actively working with our local group or with this association (fibro Action) to raise some funding increase the noise of our conditions. 11th of May is FM day perhaps we can do something via our local community.

I am not sure, how can we get the Fibro Action to help us for these?

[clare_hart]

I am sorry you are having these sleepless nights. I can sympathize. I usually have my worst problems getting to sleep, but I do wake up sometimes and wonder what the heck.

I like to use moist heat pads to relax me and help to get to sleep. There are times though when this doesn't help and I feel pain that tingles throughout my hips and lower back and up my spine, not to mention other aches. So I give in and take a hydrochodone. I really do take them sparingly, but my doc seems to think my pain will go away . . .

Anyway, there are lots of remedies I've used, herbal and otherwise. SOme work, some don't.

What have you tried - that help or don't help you?

As far as recognizing us as having a disease, which was discussed above, medical professionals who are sympathetic to our condition and actually believe it *IS* a disease, are working on reclassifying it as one, giving ME/CFS a new name which ends in "disease." How soon the medical field in general will accept this (not to mention even have heard of it - unbelieveable) is an unknown.