New member

[cosmondo]

Probably had fibro for over a decade, new diagnosis few months ago.

Bitter/sweet diagnosis, I feel 'seen' in some aspect, having had blood tests etc for years without any suggestion of a reason for feeling widespread pain & low mood/energy. So to get a possible reason, was weirdly somewhat of a validation - I seem to tick all the boxes with bruxism, IBS & fibro in the family, also the fog & that painkillers don't particularly work for me.

But, after looking into what fibro is & what the diagnosis means, I don't really feel seen anymore. It seems a cop out for the GP, he's told me there's no real help available & to basically suck it up & get on with it (which I've been doing for a decade).

Gave me amitriptyline & a referral to the gym, which is quite funny. They don't seem to have any insight into the 'condition', the gym is entirely correct but there little chance in me achieving that, maybe in the v long term hopefully.

The gym also costs money, mostly everything that helps does - hot baths with salts, massages, counselling, lotions/potions, therapies etc..

I've applied for (Scottish) PiP, I really hope they take into account the fact, that they're diagnosing people with a condition, which they freely adit they can do little to help with, whilst also acknowledging its debilitating effects on life (not life-style, Life).

If they can give people a diagnosis, I really feel that should come with support, help & assistance. When they admit there's little the NHS can do, PiP could step in to provide the means that support through private means - which I guess is what it's for.

I don't know how the system works, but with something like fibro it really did feel like 'yeah, we see you & we understand, but there's really nothing we can do - now toddle off'.

So, yeah a bitter/sweet experience. Maybe if I got the PiP award, I would feel more positive. I've already cut my working hours as much as possible & also stepped down a fair few rungs to fill a much less stressful role. Feels little else I can do to help myself.

Just keep plodding on, with a young family to provide for I'm all out of ideas & pretty done in

[Wilson16]

You have voiced exactly how I and many other people with Fibro feel. I have no answers/recommendations but ‘see you ‘. For me I feel like unless you live somewhere there is a Medical person who either has Fibro or has an interest we are left to muddle through and just get on with it .

[Dinkie]

Hi and welcome,

Totally agree that we are often left to "get on with it". There are things you can do. I requested a referral to one of the fibro clinics. To get it I had to write to my GP, follow it up with a telephone consult as he was very resistent to letting me have a referral. If you ask in writing then it forms part of your notes and there is no denying the request. If it is done during a normal consult then it may get missed off your notes. The fibro clinic I attended (Guys & St Thomas's) was great, saw 4 professionals who then put together a plan of action and sent it to my GP. It was a very informative day and to be honest the best bit was being believed about the daily struggles and the problems with living with fibro.

Also in our area we can self refer for CBT which works for some. If you go down this route please go with an open mind.

Try some epsom salt baths if you haven't done so already. Helps with the muscle aches and pains. Also if you haven't had your vitamin D levels checked recently that's worth doing as low vitamin D can cause all sorts of problems.

Gentle exercise like Tai Chi can sometimes be beneficial too. It's very much trial and error as what works for one may not work for another.

You are protected employment wise under the Equality Act 2010. Your employer should offer an occupational health assessment and reasonable adjustments could be put in place to allow you to stay in employment. I went through this many years ago and dispite my reluctance to attend I am glad I did as the adjustments were really helpful and I am still with the same company.

[Wilson16 in reply to Dinkie]

Can I ask what sort of action plan the Fibro clinic advised please ? Many thanks 👍

[Dinkie in reply to Wilson16]

It’s all focused on the particular problems faced by the individual concerned. For instance hydrotherapy is no use to me as I’m allergic to the chemicals likewise pain cannot be controlled by medication as I seem to have bad side effects although I did tolerate the spinal injections well. It’s a tailored plan so I can’t say what they recommend generally.

[Gulfstream_Maggie in reply to Dinkie]

I’ve found that some employers although appearing to be “supportive” and putting adjustments in place have only been doing this as a box ticking exercise.

One particular employer terminated my employment just on probation completion because they didn’t want to support me.

I would’ve gone to a tribunal but haven’t the energy.

[Dinkie in reply to Gulfstream_Maggie]

That’s sad my employers have been more than helpful. Pity you didn’t take it further. I had to take my late husband’s employer to tribunal - never got that far they settled on advice of occupational health company they employed to support them. If it ever happens again there are plenty of companies out there willing to help.

[bookish in reply to Gulfstream_Maggie]

I was medically advised not to go to tribunal due to the additional stress and time that I'd be under that stress. They wouldn't put the agreed adjustments in place - so I left.....Best decision I could have made for my health.

[Wilson16 in reply to Dinkie]

Thank you

[-JW-]

Sadly I can’t offer any advice but just reading your post makes me feel seen. I have heard absolutely nothing from my gp since my diagnosis a year ago. I did the gym referral but despite all my best efforts it could never work for me as the local council run leisure centre was just too cold! Gym and studio air con freezing, pool water freezing, I tried multiple classes but cancelled my membership as I was going but ending up with core temps dropping to 35 🤷‍♀️ I wanted to tackle this with lifestyle rather than meds so very much feel like the gp can offer me no help now as they just want to give out pills. Seen but not seen at all 🤔

[Yassytina FMA UK Volunteer]

Hello and welcome, yes your post says it all, get the diagnosis you feel relieved at 1st, then it’s what comes next , I’ve learnt more by being on this forum the last few years , a very big unwanted club that we do reach out too each other , lots of helpful advice , stories of our symptoms and how it can affect our daily lives. Having a young family must be very hard for you younger folk and totally wearing (I didn’t get Fibro till my late 50s ) I hope the Scottish PIP helps you and not too long till you hear from them xx

[GillyGangGong]

I felt the same. I’ve had “fibro” for almost 20 years,now I hate the term. Fibromyalgia! meaning muscle pain. The looks and treatment I have suffered from the medical community over the years has cause me so much anxiety & depression. I have lots of appointments witu specialists, tests ect…. Realistically I have hypermobilty scoliosis, bursitis’s impingement in my shoulder spondylolisthesis osteoporosis and osteoarthritis, I choose to believe these are the cause of my widespread pain. Not the word fibromyalgia as it hasn’t got me any further testing or compassion. This is just me. PS I’ve had two lots of CBT the first was online and was not helpful so i decided to go face-face and had 16 sessions of counselling it really helped! If you get a good counselling keep at it. I’ve put myself forward for some more after dealing with breast cancer for the past 8 months.

[cosmondo]

Thank you all dearly, to everyone who took the time to read & reply. A welcoming forum, which I feel will be worth its weight in gold.

I've already learned a lot, thank you for all the suggestions & info.

Greatly appreciated.

[Katiejay]

Hi I’m sorry for late reply everything seems to be going into junk mail who knows why .

I so feel your pain . And the mixed feeling after being diagnosed is really my thoughts as well .

I have had counselling and it really helps but after trying so many the one that has really listened and is helpful is the one that costs so much I can hardly ever have a session as we all know living only on benefits doesn’t allow for such things .

Also my hands have become more and more an issue and because of that I have to rely on more food eg diced onions because chopping is so very painful . But with this obviously incurs more cost than say an onion so my money gets even tighter and counselling even though needed is at the bottom of my money priorities.

Even the consultant for pain management contacted my Gp about my mental state and things have been put in place ( whatever that means) but the only person that has contacted me yet since that is someone that mentioned ballet , line dancing and activities that I can’t physically do , or crafts my hands won’t let me do . Then there were maybe things like mindfulness courses but they incurred costs I just don’t have the money for and even though my children have offered I really don’t think they should have to help me as much as they do already .

As always it just seems such a frustrating situation we find ourselves in and this doesn’t help the fibromyalgia at all .

So to you all my fellow sufferers I send a virtual hug and know at least here , we are heard and we feel your pain x