Find the cause!

[CharliesAngel]

In 1999 I was diagnosed with FM. Severe symptoms started in 1998 when I moved into my new home (although I most certainly had less dramatic symptoms through my childhood). Along with the new home came new carpets and a new settee. Having left this home, I took aforementioned settee and leftover remnants of same carpet (to use as floor mats) to my next home. Two years ago, I moved out of my second home and skipped old settee and carpet. The reason why I mention the above is that since moving to my third home, 90% of my symptoms have gone. Fourteen years of pain has virtually disappeared.

I read a few weeks ago that formaldehyde may have some connection in the bringing on of FM. Both my settee and carpets were treated with anti-spillage chemicals which indeed contained formaldehyde . Having obviously replaced the settee and carpet, it does make you wonder if these items exasperated and ultimately led to the severity of my FM: to me it is too much of a coincidence. Obviously some of you may not be able to pinpoint any one thing but after four days of moving into my home in 1998, I became really poorly so to me its a no-brainer.

At my worst - and a little help to others out there - one thing that made me feel much better was to MOVE! A lot of sufferers lounge about all day and then struggle to fall asleep at night. I did find during my eight months of doing this (and whilst on 50mg of amitriptyline) that I was in an awful lot of pain and, gained three stone which is unhelpful. It really is a case of self management. If I didn't walk at least 5 miles, three times a week (build up to this obviously and s-t-r-e-t-c-h!) I would seize up. Also, additional weight has to go (sorry people!). I found no benefit with any tablets, not even herbal preparations and changed nothing in my diet with the exception of cutting back caffeine (not allowing myself coffee after 6pm made a little difference). Strangest thing is I now dream which is something I never did so obviously I'm getting deep, refreshing sleep.

Good luck everyone....love and light to you all and hopefully this may help at least someone. God bless xx

[ladymoth]

Hi CharliesAngel,

This is interesting. Formaldehyde is very poisonous, and I could never understand why it has been so widely used in soft furnishings - well apart from the fact that it's an amazingly good preservative!

I have been exposed to a lot of the stuff in my lifetime - we used to use it as a fixative for laboratory specimens - but to the best of my knowledge I'm not exposed to it at all these days.

I agree with you about moving around - it really helps. The only problem is that high levels of pain prevent you taking exercise -- it's a vicious circle indeed.

Personally, if I'm having a really bad day, I take the biggest dose allowed of analgesics, have a long hot shower, put on my tracksuit and attempt to walk a mile or two. It ain't pleasant, but it seems to improve things. I also do 'cat stretches' which helps more than you could believe, and I watch my weight constantly.

Putting it in a nutshell, this is a condition which needs aggressive management - not the easiest remedy when you're exhausted and in pain!

The formaldehyde thing is certainly interesting. has anyone else had a similar experience?

Anyway - glad you're feeling improved!

Hugs .... Moffy

[CharliesAngel]

Hi Moffy lovely to hear from you

I've just google "Formaldehyde and Fibromyalgia" just to make sure I wasn't mistaken what I had read on some FM Twitter page, and an NHS site interestingly states that when the sweetener Aspartame is heated to 86 degrees it converts to Formaldehyde. Given the bad press sweeteners get, it does make you wonder!

I suppose working in a hospital would have exposed you to all sorts of things and clearly not able to pinpoint any particular moment it took you down, and now you've retired - even though no two people are the same - I would have thought should that have been the case your symptoms would have greatly improved. For me, I found it too much of a coincidence to ignore.

Glad to hear you manage well and yes, aggressive management all the way:

Take care Moffy

[Hidden]

My goodness that's scarey stuff about Aspartame. I must admit it's banned from my house as I've always worried about it after reading an article from the USA about it possibly being carcinogenic and the full effect wouldn't be known until about 20 year's time, that was enough to spook me. It's terrifying to see how many drinks and food products these days have Aspartame in. Now hearing it turns into Formaldehyde, well I can't say I'm surprised! The sooner it is banned in this country the better in my opinion. I agree that aggressive management of Fibromyalgia is the best way to live with it. The more we do, the more we can eventually do, it's just the starting of this philosophy that's the hardest part. I live my life exactly how Moffy and CharliesAngel describe, I refuse to be beaten, take maximum pain relief etc and try to get on with it, having exercise when I can etc. By being positive, it's amazing how much we can still achieve.

[julieevh]

I have CFS/ME as well, all but the mildest exercise (gentle stretching is okay) makes me really, really, really (you get the idea?) poorly. Catch 22

So I have to treat myself gently and accept that where I have a great expenditure of energy (eg front row tickets to see Donny and Marie lol) I will in all probability be bed bound for a week or so afterwards and arrange my life accordingly.

Julie xx

[julieevh]

whoops that was more a reply to previous post than the original - me bad

Julie xx