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The UKFibromyalgia Forums • View topic - Confused!!



Confused!!

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Confused!!

Postby kassiopeia » Fri Aug 04, 2006 9:47 pm

Hello everyone
I have been told by my doctor today that I have fibromyalgia but he didn't tell me anything about it! He just told me he would post some info. I have suffered for the past few years and had loads of tests including MRI. I started to feel like a complete neurotic fool, especially when I was told it was depression! I knew it wasn't as I had suffered depression after my daughter was born so refused to take the tablets.

I was quite pleased at first to finally have a diagnosis and for my doctor to recognise that my suffering was real and not just psychosomatic as I was told by one doctor and when I came on this site I was crying as it was me they were talking about!! :shock:

I'm now feeling a little frightened after reading how bad things are for a lot of you :cry: I'm wondering if things will gradually get worse for me as it has been slowly doing :?:

On the bright side, I can now force the council into giving me a bath in my house :D

Take care everyone xx
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Postby Kristine » Fri Aug 04, 2006 11:30 pm

Hi
kassiopeia,

Sorry to hear you have this rotten disease, unfortunately, it is a progressive illness even if "they" tell you it isn't.

Have a read up of www.fibromyalgiatreatment.com lots of info for you to read up on and the possibility of getting your life back as well.

I have been on the Guaifenesin Protocol since 2001 and lead a pretty normal life.

Alternatively, there is a treatment from Spain that some people are getting good results with, called Recuperat-ion, you can read Alfred Blasi's story at http://www.alfredblasi.net/eng/experiencia/ingles.HTM at the bottom of the page is the website for the recup.

My best wishes to you,

Kristine x
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Postby kassiopeia » Sat Aug 05, 2006 3:38 pm

Hi Kristine,

Thanks for your reply. What I wanted to ask, but forgot until I had gone to bed (I'm sure you'll understand :? ), was what will happen now?

I loooked at the web site (thankyou) and it says you n your doc have to discuss it to see if it's right for you.

Will I be referred to someone else? Will I get physio or is that only for people whose fibro has progressed more than mine?

I'm full of questions and I won't see him again till mid September. I had a bit of an argument with him yesterday as he said it was because of all the stress in my life and because I was overweight, thats what causes it. I reminded him of my life 5 years previous and of my life when I was 14 and the things I had come through and how he had told me around 18 months ago that I was depressed and told me to get a memory self help book. I then pointed out how much my life had improved in the past four years and asked him to tell me how this could be the case. He simply said that I was still stressed and because I'm coping so well my body is finding other ways for the stress to be released. So basically, although I didn't really realise it untill last night, he IS still saying it's psychosomatic isn't he?

AND he really wound me up about the weight thing. All my symptoms started after I gave birth to my twins who will be three next month. I was in great shape throughout and didn't get fat just had a nice pregnant belly like the girls I have always envied (I was like Violet in Charlie and the Chocolate Factory when I had my son :D :D ). Anyway, after they were born I gained weight. I have been to the doctors, got tablets, only to go back and see a different one in the practice and have them refused as I wasn't overweight enough, then for them to tell me on another occasion that surgery was the only answer as I had had a operation on my womb then had to have c section as one of the twins was breech. This meant my muscles had been cut too many times for me to ever gain the tone back plus because I was so big with the twins (both nearly 7 pound :shock: ) my skin had been stretched too much that it wouldn't go back and needed cutting away.

The cheeky b***er is then sat there telling me the only way I will lose it is by eating less than I am now. It isn't possible, I think I would do some real damage to myself. Sometimes I go for days without eating simply because I forget but when I do eat I eat healthily eg, yesterday I had one meal and it was rice, pasta, peppers, onion, red onion and a little salad cream. Anyhoo, sorry I am rambling on aren't I, he has told me to keep a diary of what I eat for a fortnight then see the nurse. I don't think he believes me! I felt like I might as well have been sat there saying "I just can't understand why I'm so fat" through a mouthfull of cream cake :evil:

My point is, and I can't believe I still remember it, I came out of there pleased that I was finally taken seriously only to realise now that he has just completely patronised me. That feels sooooooooooooo much better thankyou :P

I was reading last night that weight gain was a symptom. Is it a common one do you know or am I just making excuses now :roll: :wink:
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Postby sarah » Sat Aug 05, 2006 8:54 pm

Hi Kassiopeia,

Sorry to hear about all your troubles. Sounds like your doc is a bit of a pilchard. I don't know if weight gain is part of the condition but I've put on a stone since last august when my symptoms started affecting my life. I also stopped smoking because I naively thought it was my smoking that was causing the pain. I also didn't want to go to the doc while I was still smoking cos I knew he'd say that I should give up. Actually the pains got worse after I stopped smoking. I thought it was supposed to make you feel better! I'm still waiting for the benefits of not smoking to kick in. I'm going to see my consultant on Monday and I've been advised by the lovely people on this site to write a list of everything I want to say to him, all the answers I need and all my symptoms. Perhaps you should ask for a second opinion and write down everything you want to ask a GOOD doctor. Glad you feel better now you've got it off your chest. Speak soon
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Postby BuffyBoo » Sun Aug 06, 2006 1:54 am

Research has shown that people with poor sleep have weight problems because the hormone that tells you to stop eating is diminished and the one that tells you you are hungry is in overdrive.....they think it's a spin off of the chronic fatgue thing.
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Postby joyaura » Sun Aug 06, 2006 12:21 pm

Hi Folks

Seems most GPs know little about Fibro - I call mine - my everloving GP !!!!!! about Fibro getting worse yes I think it does BUT the more you know about it the better you can deal with it . I have had it for about 16yrs and the last 3 have been the best I have felt . Yes I have more probs now but filled with loads of info I can handle them much better. I listen to my body and react accordilly. I have filled my family , friends and professionals with loads of info too.
Weight gain oops I have gained 2st since I stop smoking 15mths ago ( just lost 8lbs ) I was told smoking eats up 200cals a day which means you can 1lb or more a week without overeating . I have found no benifits only the money .
I read about lack of sleep causing weight gain . What chance haveI got of being super slim lol :lol:

Ok this cuddley lady of to shower

Joy xx
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Postby kassiopeia » Mon Aug 07, 2006 12:31 pm

Thanks guy's.
I'm feeling a bit better today. My boyfriend totally bailed on me (he is now collecting all the things he left at my house) so I was feeling like s**t about everything (I was also told I may have to have a hystorectomy for something else) but I now know who I can rely on and had loads of lovely cuddles from two of my best friends last night. It's amazing what a hug can do isn't it :D

I had some fun at giving the neighbours something to talk about as well by letting one guy out the back and the other out the front :lol:
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Postby Carolyn » Mon Aug 07, 2006 3:45 pm

Glad to hear you are feeling a bit better today. Sorry to hear about the boyfriend thing . I liked the bit about giving the neighbours something to talk about.

When will you find out if you have to have a hysterectomy.

Gentle Hugs

Carolyn
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Postby Kristine » Mon Aug 07, 2006 3:59 pm

Kass,

Why are you having a hysterectomy?? I only ask because that was going to happen to me because I had awful lower stomach pain for years, then I had fibroids. :roll: Turned out to be IBS and I didn't need the op. I have read where lots of women have been given a hysterectomy and have gotten no relief, I'd avoid having any op if it's at all possible.

Kristine x
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Postby kassiopeia » Tue Aug 08, 2006 12:33 am

I have had IBS for years but again with that it took years to diagnose. It is because I have fibroids (they think) that I may have to have a hystorectomy. I had an operation on my womb around 4 years ago because it had prolapsed then I became pregnant with twins :shock: and it put too much strain on it and reversed the effects the operation had given.

At the time of the operation, and indeed when I found out I was pregnant, I planned to have no further family. Because I am now sterilised, if I do have fibroids, given my history with my womb and my completed family, they have told me it would probably be the course of action they would take.

I would like to avoid an op as I've heard it's really bad and from experience I know they are all different in the effects they have on you e.g. the op on my womb took me ages to recover from and they missed some stitches. By the time they realised the mistake the skin had fused round them and they literally pulled them out of my skin with no pain relief at all :oops: :shock: :evil: :twisted: :(

On the other hand, when I had a c section with my twins I was expecting the same recuperation period and pain as they were going to cut me in the same place etc but the next day I felt fine and couldn't believe how much I could do compared to my last experience.

I have heard of people taking months to recover and then others manage fine quite quickly afterwards. I did wonder whether fibroids have anything to do with the fibro as they sound so similar, any ideas?

BTW, glad you didn't need an op Kristine.
Carolyn, glad you liked that, got to do something to liven up the neighbourhood gosip circuit haven't you :lol:
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Postby Kristine » Tue Aug 08, 2006 12:40 am

Hi,

Nope, fibroids have nothing to do with fibro, but, they do go away after the menopause.........Yes, I am glad I didn't go ahead and have the op too, I'd like to keep the rest of my bits, I had a kidney removed about 14 years ago and that was enough for me :cry: At least it wasn't a gut wound and I left hospital on the 5th day after the op, they like to chuck us out quick eh.

I do hope you can avoid having this op.

Love,
Kristine x
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Postby Kristine » Tue Aug 08, 2006 12:42 am

By the way, what are you doing up so late at night, can't sleep????
The joys of fibro eh! I'm just off to bed, I watched both episodes of Big Love tonight, long time for me to sit still, hopefully I will sleep all night for a change.

Kristine x
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Postby kassiopeia » Tue Aug 08, 2006 12:57 am

I am always so tired during the day and almost dropping off yet as soon as I get in bed I'm wide awake! Don't get me wrong, my body still feels knackered but I just can't sleep. I just have to lie there for hours with my eye's shut cos I know they will be killing the next day if I don't rest them.

It's so nice to finally know I'm not alone :D

What's Big Love? Not heard of it. Is it good?

Love Kass x
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Postby Kristine » Tue Aug 08, 2006 1:08 am

big Love was about polygamy and the mormon church in Utah, quite interesting really, I used to get some of the young american elders coming around, wasn't interested in their religion but would always ask them in for a cup of hot choc or something if it was bad weather. They are nice enough people, one of the ones I met was a descendant of Brigham Young, one of the founders of their church.

Have you tried 5htp for sleep, or can you get someone to bring home some melatonin from the states or order it online, I have friends who have used both these with good results. A bath with some epsom salts helps to relax you too, all that magnesium,

When I first started to crash with fibro, I noticed in the months up to the final crash that I would wake every hour on the hour and I got progressively more exhausted as the time went on, I really think this has to be one of the worst symptoms we can have because so much else hinges on getting a good nights rest. I do sleep quite well these days, usually only wake up momentarily once a night and every so often I have a snore off in the afternoon for a couple of hours.............. can't seem to get down to any serious housework though..... ah well, dust only gets so thick eh........

Night night, I'm off for some zzzzzz's now

Kristine x :wink:
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Postby kassiopeia » Tue Aug 08, 2006 1:11 am

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