Alone

[anno1]

Hi everyone, i have just found this site, i am so happy that i don't feel so isolated.

I have had fibo for over 20yrs, battled through it, plus working (what an ordeal, every minute hoping you can make the shift, and falling into disablement after)

I did seek medical help 10 yrs ago, but was told it's all in my head, so thought better battle on. No one seem's to take any notice in what you say! In fact i tell them how i feel and they say it's not like that.... it's like this!

I have reached a brick wall where i virtually am in so much pain i have taken to bed for three weeks, i could hardly move.

Saw the doctor who sent me to a pain clinic. Told her my pains, she said i was stressed which was causing it... No i said the only time i feel stressed is when i suddenly get struck down in pain, then the stress follows, her reply was no it's the other way round if you manage your stress you can manage fibo........

Honestly !!

I don't claim anything i just live a life in circles. By the way i loved my job, so hardly stress there..

[Yassytina FMA UK Volunteer]

Hello and welcome it’s good to chat here on a very well run forum, very frustrating but here we do really understand how difficult it is day to day. Talking to each other helps as we are in a very big club🙁xx

[fenbadger]

sorry to say you're far from alone. When I joined this group I was struck by the number of times medics are quoted as saying it's stress or all in the mind. There's a little we can do but not all that much. As a non medic I cannot make recommendations but some of the things that help are Voltarol type gels, TENS. Some have experimented with CBD but the jury still seems to be out. I have a series of exercises from Physio, but no progress in 8 years. I wish you well. This site is supportive and that alone may help.

[anno1 in reply to fenbadger]

Thank You , for the reply.It's so finely lovely to think you belong some where!!

[anno1]

I came across this site by accident, and it's the best accident i have ever had!Even when you have family they don't understand you.

I feel really lucky to find you all!!

[Hidden in reply to anno1]

Same! Joined today xxxx

[Wobblygirl]

Welcome...I haven't been on this site too long but every query has been met with advice and support.

Originally yr 'problem' seems like it's only you but all so often people identify here...

It feels amazing to be heard+understood as so many folk don't!!!

I'm still trying to understand what might help the pain... Mine is awful at night so sleep is affected but is better when upright! I rely on heat totally!

I am abt to join a pain clinic next month so I'll let you know how it goes...

So sad that yr experiences with yr professionals hasn't been supportive.

Pls take a gentle hug+know you're amongst some very lovely people. X

[LoobyM]

Hello anno1 sorry to hear your story. We're lucky to have these forums where we can chat with people who can relate. My biggest frustration since being diagnosed with Fibro is the lack of understanding and empathy from my family. They think it's all in my head. Luckily for them they don't see me when I'm at my worst. It has really driven a wedge between me and them as I feel so resentful at their lack of understanding. "Well she looks ok"Only my husband truly understands and of course other fibro sufferers.

I'm glad you have found this group and some support 😀

[Cat00]

Completely agree with you there. Of course stress exacerbates fibro bc stress exacerbates everything on earth but I find more often than not my body reacts badly to something and stress follows that not the other way round.

[anno1 in reply to Cat00]

Thank you for the reply, so nice for someone to feel the same . I thought it's just me!

[saj01]

Hi... from what I understand even the doctors can't agree what does cause fibro. I think the latest is that it's neurological. Sadly, there's so many different symptoms... were are all different, but no-one can feel your pain. Some people do seem to improve with anti depressants... It's sad that Gp you saw wasn't sympathetic, I wish I had some answers to offer you. I'm trying different things, monitoring my diet, increasing magnesium etc. doing a bit of exercise each morning and walking a bit. What I struggle with is the neck and head pain and the sudden exhaustion ... don't understand that and don't seem able to prevent it. Chin up... we're all in the same boat... and we can't all be imagining things.

[JayCeon]

Hi @anno1-notalone... :-)The brick wall I reached 2 years ago kept me from working for 10 months... only part time on easier stuff since...

I also loved my job, but I admit it was "eustress". For my new condition MCAS proponents say that even eustress isn't good for it. However I now keep all stress down as much as I can, do so much to get up again (1-5h/d exercises, 30 supps), but my activity level from fibro alone never quite reached 40%. MCAS has taken it down more...

What I do think is that working on stress can make a little bit of a difference, like @Cat00 implied, but in my case that's mainly just keeping to the sweet spots. My psychologist and my psychiatrist both agree on that it's not stress or depression. So I hope you'll find docs that know that.