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Author Topic: Fibromyalgia  (Read 3391 times)

Paula M

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Fibromyalgia
« on: August 11, 2018, 05:19:00 PM »

 Evening all,
This is a bit of a long shot - my GP thinks i have Fibromyalgia. After weaning myself off antidepressants a month or so ago, I've felt nothing but all over pain and many other symptoms which has lead GP to this conclusion.
My blood tests show I'm post meno.
Has anyone else experienced this?
At the moment I feel the onslaught of depression and life is a bit miserable.
Any thoughts would be helpful, thanks x
« Last Edit: August 11, 2018, 05:36:23 PM by Paula M »
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Ladybt28

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Re: Fibromyalgia
« Reply #1 on: August 11, 2018, 06:30:46 PM »

I have a diagnosis of fibromyalgia and I ditched all my anti-depressants 3 years ago.  Now all I take is high blood pressure meds and my hrt.  However, I am not convinced that it is fibromyalgia - I think it is because I am 56 and for quite a few years my hormones have been up the left!  In fact I now think I have always had hormonal problems.

I have had 18 months of ups and downs with my hrt and 4 months or so without any altogether before taking it up again 3 weeks ago.  My knees/ankles and elbows are sore to touch and ache - I am suffering from severe depression but it feels different to the kind I had before I cant describe it  I have no energy and feel weak and feeble.

I am new to the forum and the general conclusion from on here is that it is probably hormonal and a lot of things have clicked into place from past medical issues having read loads of things on here.  I can only comment on what I experience and feel.

There are loads of people here more qualified to comment than me but I can certainly say you are in the right place for help and support and to run your thoughts past.  Just getting stuff out of your head helps no end.

If you are post meno are you on hrt?

Welcome aboard Paula -  :banana:


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Paula M

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Re: Fibromyalgia
« Reply #2 on: August 11, 2018, 09:14:39 PM »

Thanks for the replies.
I have hrt patches, was on the 50 but after blood test said post, am now on 25. Also have vaginal hrt 10mg, helps with dryness and thinning skin.
Right now I don't know whether to go back on Escitalapram to help with what I know to be depression, or to ride it out.
GP told me that although post, I would still for a while, have all menopausal symptoms.  I have dreadful night sweats and pain throughout my body wakes me up. Brain fog is always there, esp mornings. Today I have felt so angry but have no reason. Took myself off to bed at 4pm, have hardly seen partner. Feel isolated even though I'm not?!

I know what you mean Ladybt, 're a different kind of depression.  I'm just in tears most of the time, but I can get up and get myself to work etc. It takes very little to upset me though.
It's really difficult to work out if this is all part of meno, fibro or depression 🤯 xx
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Ladybt28

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Re: Fibromyalgia
« Reply #3 on: August 11, 2018, 10:39:00 PM »

It is the most horrendous feeling I know Paula - its like some kind of torture.  I know what you mean about the isolation, it feels like you have this invisible barrier round you - you cant connect with anyone and they can't make an impact on you.  You can go through the motions and no one knows any different but everything feels remote a sort of deadness inside.

I was on anti-depressants 40 years so pretty much 80% of my life has felt like that but off 3 years - I have since discovered that the majority of my problems are hormonal.  I still haven't a handle on it as its all a bit new but now I have some idea what's going on at least I know what to ask and the people to ask.  I just thought I was a miserable freak but hey ho now I know I'm not
Sparkle - what with the one sided headaches and the joint pains - swollen fingers - me too and a problem under my left shoulder blade - we could be twins!  At least I know I'm no alone and not completely weird.  ITS THE HORMONES!  :-\ :'( :o


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Dotty

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Re: Fibromyalgia
« Reply #4 on: August 12, 2018, 06:44:53 AM »

PaulaM .... go back to the 50 patches. There is no need to reduce the dosage just because you are post meno. Lots of ladies suffer for a long time post meno.

I too was told I had CFS but I now know that it was peri menopause. I suffered for 6 years with no medication because I was misdiagnosed. X
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Hurdity

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Re: Fibromyalgia
« Reply #5 on: August 12, 2018, 07:33:39 PM »

Hi Paula M

 :welcomemm:

I agree with the others - do take a higher dose of HRT. If you are post-menopausal and experiencing symptoms then you need to have more oestrogen especially if you know that it did the trick for you. What progestogen do you take to protect the womb, or have you had a hysterectomy or have a Mirena coil?

I would not be fobbed off with a diagnosis of fibromyalgia - my GP tried to tell me that I had this and was going to refer me. Although I was on systemic HRT at the time I asked for a testosterone tests and was told we can't do testosterone tests for everyone who complains of tiredness! Anyway in my case my aches and pains especially after exercise and excess fatigue ( after exercise) was due to low testosterone - I also had no libido. Even though I didn't have blood tests I went to see a specialist gynae and my life was transformed with the help of a little blob of daily T gel.

Similarly many women are given a diagnosis of CFS ( as Dotty - sorry to hear this Dotty!) , ME or fibromyalgia when it is actually their hormones that are out of whack - specifically oestrogen, testosterone and thyroid - a major culprit and one of the worst treated endocrine disorders on NHS from what I've read. These diagnoses tend to be a catch-all for docs saying we don't know what is wrong with you but your symptoms belong to syndrome and then give it a name and wash their hands of you! In my case my GP actually shrugged her shoulders and said " fibromyalgia?" We have heard about this sort of thing several times on the forum.

If you need a higher dose than 50 mcg then don't be afraid to go higher. You need an absolute minimum dose that controls your night sweats and ideally most of the other symptoms too - but do give each dose a few weeks (ideally 3 months) before deciding it's not working for you. If you can cope - do resist going back on the ADs and get your hormones sorted out first :)

Good luck and let us know the outcome?

Hurdity x
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Paula M

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Re: Fibromyalgia
« Reply #6 on: August 12, 2018, 09:20:17 PM »

Well, what can i say?!
Your replies are revelations!
Progesterone is provided via the Mirena coil, Hurdity. I've not had a period since 2006, menopause and post was detected by blood tests and symptoms. When gp told me I was post, she also told me to half my patches. I can't take oral hrt due to having an undetected blood clot on my lung in 2006.
I really don't want to go back on AD's. I stopped taking them after I felt my mental health had improved greatly over the last few years, just felt I didn't need them anymore. I've had thyroid test and all ok.
I've been prescribed Amitryptiline for the "Fibro", but am pretty sure this is not helping me mentally. I wonder if this is responsible for my feeling of depression and having thoughts that I would be better off not living - Don't be alarmed, I have too much to live for, but it freaks me out to think like this.
Being able to talk openly like this makes me feel not so isolated,  I read the link Hurdity posted, enlightening! I'll add overactive bladder to that list!
I have a really supportive partner, but he has never seen me like this and doesn't know how to help.
One of my dearest friends says I'm being stubborn and pretending it's not depression and urges me to go back on AD's..... I know she means well.
I'll contact my gp,  just to confirm it's ok to go back to 50mg patches.
Thank you so much for all your responses  and advice cx
« Last Edit: August 12, 2018, 09:45:57 PM by Paula M »
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Ladybt28

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Re: Fibromyalgia
« Reply #7 on: August 12, 2018, 10:25:00 PM »

Oh Paula - I had amyltriptiline/pregabline and arthrotec (which is the painkiller diclofenac) I had Butrans patches at one point for pain which are opiates - on top of those there were anti-depressants.  After 5 years with all that lot together - it got to the point where I couldn't string a sentence together and my family and I thought I had alzheimers!   I binned the lot - cold turkey - I most certainly DO NOT under any circumstances recommend doing that - there is a story to the cold turkey episode but anyway they were binned!  The amyltriptiline isnt causing the depression but it does make you brain slow after using it a while and it has a sedative effect.

Anti-depressants 40 years! - they didnt make any difference.  Now with this meno thing it all makes perfect sense it is hormonal depression - you are not being stubborn the anti-depressants just make you numb.  I am really suffering with depression at the moment dangerously so but it is due to hormones I will never go back on the anti-depressants but thats just me I wouldnt comment for anyone else.

This forum IS a revelation isnt it - aren't people wonderful - some ladies have posted 1000s of posts and comments and you dont have to wait very long before someone has something to say.  Follow what the ladies say and I'm sure we will all be feeling better soon.


I'm having to put some things I've learnt into practice and I have got so much from it in a short space of time - I feel that at last after all these years of misery I may finally be on the right track - try what the ladies say about your


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Taz2

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Re: Fibromyalgia
« Reply #8 on: August 12, 2018, 11:34:56 PM »

Hi PaulaM. I've had fibro for over twenty years. Can you tell me what symptoms led your doc to this diagnosis. As I'm sure you know the diagnostic criteria for fibro is quite specific.

Some brilliant advice from everyone as usual.

Taz  :welcomemm:
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Dotty

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Re: Fibromyalgia
« Reply #9 on: August 13, 2018, 06:43:34 AM »

Paula - have you got worse since reducing the patches? If so then you need more oestrogen. A 50 patch is fine to use. I am post meno and use 4 pumps of Oestrogel which is probably equivalent to a 100 patch. X
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Pearl plum

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Re: Fibromyalgia
« Reply #10 on: August 13, 2018, 10:00:31 AM »

Hello
I had fibromyalgia and found that my diet was causing it ( don't ask me why). I cut out flour and sugar and I no longer have fibromyalgia. I hope this helps. Try it.
It worked straight away. - maybe look at paleo diet.
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Paula M

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Re: Fibromyalgia
« Reply #11 on: August 14, 2018, 09:51:29 PM »

Hi ladies,
Dare I say I'm feeling ok at the moment??!

The dreadful depression that descended towards the end of last week finally lifted
sometime yesterday evening. I'd stopped taking Amitryptiline after Friday's dose and I am no longer getting that desperate  feeling, hoping it will last for a while   ;)
Still having joint pains and various other things like severe foot cramps, but my mental state is so much better.
Ladybt28, all told I've taken antidepressants for 15 years, so easy to stay on them, especially through meno years, but I just felt a need to be free of them. If, in future I need them, I'll go back on them. Changing my diet has helped enormously and also being particular to what I say yes to. I now think about how it will affect me when asked to 'do a favour' for anyone!
I'm going to give myself a good few weeks before increasing the patches to 50, I want to see how my body is. In answer to Taz2 - my body was painful everywhere, I felt like I had sunburn under my skin, every joint hurt, shooting pains in my fingers, sensitivity to light and noise. I couldn't bear anyone to touch me and the tiredness was every present. On the questionnaire from the gp, my combined score was 15. If it is fibro, then maybe it was a flare up? I've battled brain fog for many years, so was used to that, but the pain left me in tears and added to the insomnia.
Pearl Plum, due to acid reflux I had to change my diet drastically and now have quite a restricted diet. Cutting sugar out is the best move I've ever made! Also processed food. I believe both these foods types lead to the inflammation which goes with fibro. I bought my self a book called The Acid Watcher, it's become my bible, there are references to fibro and the benefits of cutting back on certain foods.
I'll keep you posted of my progress. I'm so glad I found this site, the ladies here have been a real lifeline over the last few days xx


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Ladybt28

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Re: Fibromyalgia
« Reply #12 on: August 14, 2018, 11:58:03 PM »

I completely agree with you Paula - I have gone through all those same thoughts - acid in food affecting joints - inflammation - all the articles read about poor gut bacteria being a possible cause of depression.  I got two points off the top of the scale with the Fibro/Rhumatology consultant but I would pretty much stake my life on it now that its not fibro.  None of the Fibro regimes made any difference to me.   If you look at one of my other posts I am just about to start on a reduced progesterone HRT regime.  Just stopping my progesterone for 2 days on the advice of the ladies here has meant  I can actually put the duvet over my joints without them feeling sore and I have taken my head out of the vice.  I have to say it has only moved from -9 to -8 but it has moved.  I know we all clutch at straws when we are looking for solutions but some peoples experiences when you read them just click and you go - "they are describing me".

Keep reading and trust your gut - you will find stuff here that makes perfect sense - trust your instincts and try some of the stuff other ladies have tried.  The way I think about is things can only stay the same or get better - they probably cant get much worse as we are all pretty much beyond the end of our tether and feeling beyond awful by the time we get to this forum

x
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Paula M

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Re: Fibromyalgia
« Reply #13 on: August 18, 2018, 10:09:26 AM »

I think you're right, Ladybt28!
My head is mangled some days, completely clear others. No rhyme or reason x
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