Fibromyalgia - Just diagnosed what the hell now

[MrDJ]

ive had lots of practice so im a old hand at it now and just wait for the next thing to attack me and say bring it on bitch.
its Slanger that needs the support now from family and friends most of all but the forums have been a godsend to me as i dont get out much in the evenings and its the bunch of jessies on here that have kept me going in the last couple of years so thank you all.

 

[crustyfolker]

"Are you only on amiltriptiline for pain" - Yes with paracetamol and ibuprofen. I think they are using the amiltriptiline as I brain pain suppressor.

They have giving me a prescription for something else - but I have to collect it and cant translate the Drs handwriting.

Ok then, See what they give you tomorrow, I wouldn't be suprised if its not some form of opiate based painkiller. Paracetamol and Ibrufen are for mild things as a rule. I don't know anything about your condition but i am guessing it can be very nasty . I hope that you can get some sort of help or pain relief that works.

 

[MrDJ]

its a minefield when it comes to medication as it will take time to find out what works for you.
what helps me is DF118 dehydrocodein, frobun anti inflamatory, and oromorph when really bad but not needed that for almost 8 months. also on methotrexate but that doesnt help with pain.
my god daughters mum has Fibro and crohns and she has previously been on the anti tnf treatment for the fibro but due to her crohns she could not have the infusion as you have to take methotrexate with that so they put her on the self injection version which you dont need methotrexate with.

 

[Mitz]

Sorry to read that you have been diagnosed with Fibromyalgia. On a more positive note, I know someone who has it. And although she experiences discomfort quite a lot of the time, it is managed well. Much easier to be treated correctly once they put a name to the condition. So keep your chin up mate. And we're always here ready to listen if you need to vent.

Wishing you the best.

 

[mejaz86]

Some doctors will try to tell you "it's all in your head" which is BS! I was on amitriptine for pain relief. But at the moment I am on pregablin, maxitram and co-codamol for pain relief. I recommend the cbd drops from Holland and Barrett, combined with the meds, they do help slightly. I've lived with good ol' Fibro for a while now

 

[jimbo106]

My Mrs was diagnosed with this. Turns out she had Hypoparathyroidism. The symptoms are very similar. If you've had blood tests check what your calcium levels are. This condition causes too much calcium being produced. Not well recognised in this country. My partner went to America earlier this year and had a tumour removed from one of her parathyroid glands. She now feels normal again and "has her life back".
Worthwhile checking this out.

 

[eightbitraptor]

I’d love to be able to give you help and advice @Slanger but I can’t. I have no experience with this and I won’t pretend to.

But I will echo what everyone else has said. This forum is an ace place, full of wonderful chunts who’ve all got you back. Good luck. And if you need anything or want to vent, I’m sure that many others as well as me will do our best [emoji106]

 

[Judith]

I need help a bit, so please keep with me.

I have had near constant pain for the last three months and as I think about it I have had similar isolated symptoms creeping in for a few years (Its hard to tell but would make sense). I also get brain fogging and today feels like someone is squeezing my brain for some reason. Any way I just got diagnosed on Monday with Fibromyalgia and I have been left hanging on an edge.

History - so many blood tests its unbelievable, been to rheumatologist, and the Neurologist on Monday who told me the diagnosis. So I was told that a physiotherapist may help, and that counselling may or may not help and thats it. No real explanation as to what may or may not happen now. Pain relief was to carry on with the medication that doesn't really work at the moment so I am going to up those as I have been told try taking more (Amitriptyline) and then shown the door.

So what do I mean about being left hanging on an edge. Well for one, its a shock there was a slight relief at putting a name to it but no real next steps apart from those mentioned above.

Questions that I thought of whilst being driving home.

What the heck does this mean?

Will I get better? Will I get worse?

What support is out there both financially and supportive groups. ?

Do I have this badly or medium or mild, I don't know. I always thought I had a higher pain threshold so how this works with Fibromyalgia who knows.

If I am at work and I take a turn for the worse how do I get home if my wife then cant leave work to take me home. (I work part time and have been waiting for a college to work to leave so I can go full time). So cant afford taxis especially at the moment.

The support at my work sucks, despite a doctors note saying amended duties and not standing for lengthy periods I am ultimately left to serve on my own (Retail) and using equipment that for the most part ultimately causes me pain. So is there any work re-training / replacement.

My mind is a mess at the moment, my family doesn't really understand my Mother took me to the hospital and on the way back I needed to get some milk. Walking back to the car I was struggling, stopping out of breath, pain exhaustion, and she just innocently laughed and signalled me to come on (Despite me explain how it made me feel on the way back). Fuck in that instant I felt so alone, misunderstood, I wanted to go find a cave in a mountain range to go and hide.

My wife seems a bit more worried about the money side of things (I can see it ticking in her brain), which is important but fuck at least ask me how I feel about this.

OK I understand its early stages and that my wife and family love me dearly but fuck at the moment I feel totally isolated.

So what the fuck has all the above shit been all about. Well relief, letting it all out, strongly it feels easier to strangers then those who love me. The other is any help, advice on what next, and I have to stop typing (You will be relived to know) as my wrist now feels like its going to snap, my fingers ache, my foot is going numb, my lumber has an elephant standing on it, and someone is still squeezing my brain.

FFS I have no advice whatsoever, just slightly understand what you're going through, as my brother has Fibromyalgia. He's been prescribed top end anti depressants- do nowt. I think that he might have gone down the CBD route. He's in so much pain..... All the time. WTF can you do to help?

 

[Slanger]

Thank you everyone for kind words and support, I am still trying to judge my body when at work and in general. Still haven’t got a handle on it yet.

I ended exhausted on Friday at work because could hardly walk (I end up standing and walking most of the day when at work, and climbing two flights of stairs to get to the toilet). To top that off Friday night had bad nights sleep kept waking up what seemed every 30mins and then slowly drifting back in time to wake up again. So had to take Saturday unpaid day off so looks like I better hide those few vape bits I just ordered when they arrive or the Mrs might kill me.

 

[Slanger]

FFS I have no advice whatsoever, just slightly understand what you're going through, as my brother has Fibromyalgia. He's been prescribed top end anti depressants- do nowt. I think that he might have gone down the CBD route. He's in so much pain..... All the time. WTF can you do to help?

It’s always a difficult one when others are in pain and you feel like you can’t do anything. By the sounds of it you are already helping a lot by being there for him, I find that at the moment just having someone to talk too once in awhile helps me with releasing the frustration which makes me slightly less tense that in turn eases the spasms and pain.

For example I got off the phone From a Fibromyalgia hotline (may have been Fibromyalgia Action UK) with someone who also suffers and although there was nothing physically she could do, I didn’t feel alone, I even managed to laugh about it. Laughter is the best medicine for raising my spirits.

I wish you and your brother all the best