www.pelvicpain.org.uk

judyb · Joined: 23 Oct 2007 Posts: 763 Location: poole

Donna and I went to the Belgian Pain Society Annual Scientific Meeting on Saturday ( we are members of the Belgian Pain Society ). Their theme for this years meeting was "Pain in Women " to tie in with the IASP.

One of the presentations we heard was on "Fibromyalgia, only women ? "

The presentation was in French and mentioned that 10% of patients are men. 44% of men with fibromyalgia have sleep apnoea. The percentage of women who also have sleep apnoea is 2.2%. It was felt by the speaker that the symptoms are more severe in men. He read a description of the pain written by a male patient who vividly described leg, sitting and foot pain and more. The speaker said that men are reluctant to express feelings of pain. They feel they are considered a "pleurnichard " or "corbaye ". One particlular medication used with fibromyalgia is ineffective in men.

Another presentation suggested that men don't talk to anyone on pain management programmes whereas women make use of social support more. It was suggested that men should be encouraged to use more of the strategies that women use. The conclusion was that the social context is important.

Judy

eddiedubs · Joined: 23 Dec 2007 Posts: 15

Hi Judy,
This makes interesting reading especially for me as I have severe sleep apnoea,I do agree that men tend to bottle things up more than women,I think the sleep apnoea makes the pain a lot worse,Dr Riant told me it can be 10 times as bad as a person who does not have sleep apnoea no wonder my pain levels do be off the scale & I have no pain relief as anything with a sedative puts me in a chomatosed state,does any one else on the forum have similar problems ?. Eddie.

Theresa · Joined: 26 Dec 2007 Posts: 39 Location: UK

Hi there,
This is just a note to say I am now on a waiting list to have a sleep study undertaken.
Best Wishes
Theresa

greyhair · Joined: 11 Feb 2009 Posts: 25

I can't take anything sedating or even mild antidepressants for fibromyalgia or I am a complete zombie. I sleep about 2 hours before the pain wakes me but thankfully don't have sleep apnea; it's my husband who has that.

Theresa · Joined: 26 Dec 2007 Posts: 39 Location: UK

Hello greyhair,
How are you? I had the sleep study last year. Since then I have spoken to one of the members on this site. They said these studies at home are not really that good. The study showed my lung capacity was on the low side. The night after the study I had to increase medication and have had real trouble with the waking up in the night. This is bcause it`s made me dry.

The idea was to get me a mask to wear at night. Has your husband tried one? My husband snored so much it woke me up (lol) he would not see a doctor about it though.

How long have you had pelvic pain and fms?

Best Wishes
Theresa

greyhair · Joined: 11 Feb 2009 Posts: 25

Hi Theresa;
Sorry I'm late replying; been away for Easter. My bit first because it's easiest. I was diagnosed with Fibro 21 years ago but have now also been diagnosed with Sjogren's syndrome so how much they are connected I have no idea. The pelvic pain from trapped nerves at T12 has been 6 1/2 years now and I'm sick of it. My GP has just refused to back me for funding to go to France until I've seen yet another pain clinic. This will be the 5th different one. He says I have to prove that no one here can treat me- if 4 different pain consultants have failed in 6 years I can't see how waiting yet more months to see another is going to make any difference!
My husband had tests for sleep apnoea about 18 years ago now but he went to a hospital in Manchester for them where they have a special sleep clinic; Withenshaw hospital. He was given a C Pap machine which worked really well; he was far less tired (working shifts doesn't help at all) and had much more energy but sadly he didn't continue with it because he just kept pulling it off at night. It was also too noisy for me and we ended up in separate rooms. They o0ffered him surgery on his soft palate but he refused so he copes as best he can by going to bed very early and napping a lot during the day. Of course his blood pressure has suffered as a result.

Theresa · Joined: 26 Dec 2007 Posts: 39 Location: UK

Hi Greyhair,
I have just written a longish note to you and messed it up (lol) perhaps it was sent? I looked at the preview, then tried to correct a mistake, then it vanished.

I have SS too.

Let me know if you received the message:)

Best Wishes
Theresa

greyhair · Joined: 11 Feb 2009 Posts: 25

Sorry, only just seen this. No I didn't get any reply

Theresa · Joined: 26 Dec 2007 Posts: 39 Location: UK

Hello Grey Hair,
I was sorry to see my message disappear before my eyes (lol) and cannot remember what I had said.
I have heard there are a lot of people who have SS and FMS. There seem
to be a lot of theories about why it happens, but no-one has any answers.

It is really awful to be in so much pain and also have difficulty with medication/sleep. I have been trying Biotine products for the dryness.
They are quite expensive, but I have had no choice as the products are not obtainable through the NHS.
Recently I was able to get some information about relieving the dryness
for night time.

I have had to come off some of the medication because I am so dry.
Have you been offered Plaquinil? I have heard that people with SS can
take this without too many side effects. I am unsure though as it depends upon the individual.

Best Wishes
Theresa