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[CLKD]

Jenny ……… no moderators called that on here 

[Jaki T]

Well that's possibly my foggy brain - I rest my case! 

Maybe it was Dr Currie but she had contacted somebody...

[Taz2]

I've found that there is still a lot of disagreement about fibro amongst the medical profession. I have had it for around fifteen years now but my new GP informed me right from the start that she doesn't consider that fibromyalgia exists and if I felt I couldn't get along with that then I was more than welcome to choose a different GP.

Taz x

[coldethyl]

My GP pointed me in direction of Internet as he knew little about the syndrome but felt it had legs as it were as an explanation for my physical pain. The next GP I had dismissed it as a somataform disorder , ignoring the fact that my anxiety had started because I had all these weird symptoms and not vice versa. Over time I learnt to just say nothing and deal with it myself. I had several relatively good years but it has come back with vengeance recently as peri heated up. Now I'm more prepared to see a link between my mental state and its severity but I certainly don't think it's all in the mind.

[dangermouse]

I had this diagnosed mildly about 15 years ago, after they ruled out rheumatism, spondylitis etc. They said there was no treatment so to just get regular massages (at own expense). Mine is very tight trigger points all over my body that never fully release and I've tried every massage therapist going but none could do anything that lasted.

Just got used to it but I only have pain if I press in the TPs but was always interested in the link with CF and ME as my (hormonal?) exhaustion started gradually around the same time.

Martine McCutcheon had ME very badly (where she had to use a wheelchair) but interestingly it vanished after her pregnancy.

I guess it's one they can't yet prove is linked to hormones even though it all seems to point that way. It has a name as its a syndrome they can't explain (like IBS) but equating that with it not existing is just ignorant.

[babyjane]

I was diagnosed (at my own expense) with CFS/ME in 2004 at the age of 47 but I had been bothered with strange symptoms since 2002.  For me I believe a lifetime of chronic mental stress predisposed me to the condition and that is what the specialist also said however at age 47 it could also have had some hormonal connection too.

 After my mother died it took a nose dive and I was very ill for 8 weeks then returned to a partial recovery.  When I hit the menopause properly with the onset of hot flushes it became more active so there is definitely a link but I would disagree that the whole condition is a result of hormonal changes.  I believe it is more complex than that with multiple contributing factors.

I do not know much about Fibro but from what I have heard it is just as misunderstood by the medical profession.

[Jaki T]

Just noticed several new replies on here (that are quite old now!)

Yes, Babyjane and others. If you Google ME and Fibromyalgia you will find they are very similar.  Luckily I have had GPs in my area recognise Fibromyalgia and take it seriously.  It is also very similar to hypothyroidism.  The symptoms of Fibromyalgia are widespread pain and chronic fatigue.  The extent of the pain varies and the places in the body where you feel it. People with Fibromyalgia have a heightened response to pain and stimulation, are sensitive to the cold (for me it feels as if my inner thermostat is broken), they often suffer from migraines, severe period pain and abdominal cramps, IBS, tendonitis, anxiety, interstitial cystitis and/or irritable bladder, poor sleep, restless leg syndrome, Vitamin D deficiency and much more. Not everybody has all the symptoms, but they will get many of the symptoms and will have 'flares' when the body or brain is under stress.

Shame on those GPs not to take it seriously or dismiss it as all in the mind. This forum is taking the same approach as I've tried in vain to get it listed among the A-Z of conditions here because if you suffer with Fibromyalgia the chances are you will suffer with a difficult menopause as I'm doing, especially having cold sweats that is when the weather is cold. The warm weather is better believe it or not.

But if you want to contact the person who runs this site she charges $25 for the privilege 

[Tinkerbellj]

I was diagnosed with fibro at the age of 23. Went away when I was pregnant and I have managed it all these years myself but now I am peri it is off the scale pain and fatigue wise so I  think it is def hormonal!!

[babyjane]

My CFS was very active during the years I was menopausal.  Since I have been post meno my hormones, although probably at a lower level, are more stable with less symptoms and my CFS is also more stable.

[CLKD]

Rheumatoid arthritis can be triggered by pregnancy hormones which decrease after delivery.

[Jaki T]

I'm bumping this because Dr Currie who is the one who set up this site continues to ignore Fibromyalgia and ME.  She charges to speak to her too...pretty appalling when millions suffer with this condition worldwide, including myself 

[Machair]

I have severe ME. I can remember the moment I got it. Virus related to polio caused pericarditis in 1996. I was struck down and ended up in intensive care. I lost my ability to walk, write, think, spell, digest food, control my temperature or my heart rate. I was in constant unrelenting pain. I was in bed for a year. That was 20 years ago.

 Still have all the symptoms I had then but some have improved but it is a struggle. No one should disbelieve these illnesses they can limit life. My two heroes and helpers on line have passed away in their youth from the disease, both were ill and both fighting to get the illnesses known and researched. People say to me are you just tired? This is the worst thing anyone can ask as it is so much more than that. Fibro is similar it is horrendous- you are not alone, and I believe that acceptance by others is our biggest challenge, as the media has done so much historically to make these diseases appear trivial. My own father thinks I am making it all up for sympathy, he always has because he read the wrong things in the newspaper. So much is expected of me, and I am too sick to action it for others. The payback is hell- it can affect all the things I mentioned and it can cause massive heart problems.

I am lucky though as I can get up now. Many can't and many are so young. The disease is horrific. My heart goes out to you. I wake up in a cold sweat each morning, it is orthostatic intolerance. I stand up and my BP is 90/80 on a good day, some days it can't even measure. So no blood flow to brain. Put me in heat and it is worse, eat a meal and again it deteriorates. This is one of the reasons many are bed bound including those with fibro. Peri makes things worse - many symptoms overlap - it is all very hard but we are all here for you and you are not alone.

[Jaki T]

Hi Machair.

So very sorry to hear about your ME    It is a devastating illness and so misunderstood as is Fibromyalgia.  I am heartened  to hear that you have improved since 20 years ago as many do not as you say and tragic that your helpers also suffering from this illness lost their lives to this. 

I think that just by posting in forums such as these we help to raise awareness. I just wish ME and Fibromyalgia were listed in the A-Z list above because that is a form of acknowledgment.  But omitting them from the lists it's as if they don't exist or are trivialised.  Yes, there has been some awful press about these very real illnesses over the years and these do untold damage. Fatigue is a huge one for me and so it is so much more than just tiredness.  I need to sleep every day in the day.  Who would choose to do that?  But it's just as if someone's unplugged your energy supply and your batteries need recharging. I'm so sorry to hear about your father's reaction. I've had the same from people sometimes. 

Yes, we get a double whammy around the menopause. It's so hard to treat because you don't know which is which. Please take care, my friend, and thanks for your kind supportive words.  What I try and do is do something nice that enjoy...like a hobby from home when I can

[Machair]

Jaki I hope you don't mind me asking but how old are you and are you peri and still having periods?

[Jaki T]

Not at all, Machair.  I am 57 and not sure if I've had my last period or not.  I am still not twelve months clear of last period yet but not had one for 5 months!