Hello and help?

[KakaB]

I’m new here.

My fiancé suggested I join a support to stop me from crumbling into myself.

I was diagnosed two years ago with Fibro. But lately it seems to have gone from manageable and okay, to just an effort to breathe.

I don’t know what else to do anymore to be really frank.

(Just to add I have a five year old and a ten month year old so these two are my push to keep going daily)

Since last September I’ve kinda just bombed downhill. Everyday it’s back pain, my bum feels like it’s gonna drop off from aching! My shoulder.. every joint. Literally.

Constant migraines. To the point where pitch black darkness is still blinding me. It’s like I can’t function.

I was told I have scoliosis. I’ve developed a hernia. My hair is falling out, I’ve gone from a size 10 to a 4. And I have these crippling stomach cramps where it literally floors me and I can’t breathe not to mention

I kept/ keep going to the doctors and they kinda just brush me off with ‘you’ve had a baby and your just tired’.

They’ve took me of five my amptitriptiline (spelling?) and I have nothing to ease me anymore.

I finally kinda of snapped a couple of months ago and said look your not treating me fairly your just palming me off and then I got referred to Rheumatoid (the doctor wasn’t generally nice). He did the body bending testrhing and felt my joints and said no it’s not this. And I’ve had bloods done for antiimmune and they came back fine. X-ray on my hips which I’m still waiting for the results. And now I’m waiting to have an MRI - I keep having these mini blackouts where it likes my heart stops and my BP just bottoms out and I go down. 9/10 I catch my self but I fell three weeks ago and smashed my face off the stairs at home so now they really won’t give me anything for the pain until I’ve had the MRI. And now they’ve kinda blacklisted me from the surgery I’ve been told if I feel any worse to just go A&E.

And work are brick walking me. I’m isolated from everyone else 20 minutes away and I’ve told them EVERYTHING. And there answer was well we’re not paying you but here’s a chair to sit on.

I’m just really scared. Really alone because no one understands it. How can I explain to people that there is something just not normal going inside me and my brain isn’t in sync with my body anymore 😔

Help.

[Miladysylvie]

Hi. What have you tried already...and have you tried some vitamins ..I know you can't cure it,but I got few good feedback of using juice plus berry capsules for fibro.

[KakaB in reply to Miladysylvie]

I’ve tried the ampti( can’t spell it) which was ok but they stopped them whilst I was pregnant because they said they weren’t sure what they would do to baby. Then they tried me with sertraline but that over stimulated me so I came off those and they haven’t give me an alternative.

I take iron and vitamin D and like a multivitamin but there just over the counter ones. I used to have the juice plus when I was younger

[Echoblue]

So sorry you are having such a horrendous time. It is incredibly frustrating when you aren’t being listened to, yet you know what you are feeling is not normal! I do hope you get some answers very soon. Not all rheumy’s are specialists in fibro. Do you have any further follow up with one? Hopefully you may see a different one next time in clinic? Is there a different GP at your surgery you can see or if not may be worth considering changing Surgery as collapsing like that isn’t right and must be very scary for you. I do hope you get answers soon, particularly with such a wonderful young family. Sending you hugs x

[KakaB in reply to Echoblue]

Thankyou, to be honest I’m not 100% sure?

The doctor from rheumatoid said I didn’t fall under his area and there wasn’t anything they could do. But he was the was who gave me the route of x rays and bloods. He said the next route would be to get referred to the pain clinic and possibly neurology. I’ve never really seen the same doctor every time at the GP’s we just get spread around them! I’m just in this weird limbo of waiting. I just have to keep pushing for help!

Thankyou xx

[Echoblue in reply to KakaB]

That limbo position is so frustrating. I hope you make headway soon x

[Peder]

Sounds as though you've been through the thick and thin of it. There loads of us here, all in the same boat, all with different aspects of fibro and other conditions to boot. All on different meds, but what i would say is some meds work for some n not for others. You are more than entitled to ask for a referral to seek a second opinion from a rheumatologist. i take boots sharp mind for the brain fog, 1000mg vit D, also grab as much sun light as possible. Crushed black pepper and turmeric helps.. you can either buy it as a vit supplement, personally i just add loads to my food. As for prescribed meds.... ask to be referred to a pain team. I hope that you feel better soon.. just think...Rome wasn't built in a day.. do what you can in small doses. Take care. XX

P

[KakaB in reply to Peder]

I’m gonna keep pushing until I can find a better balance for myself! I’m gonna try turmeric and pepper with my food now! And fingers crossed I can get a referral to the pain team in my area! Thankyou xx

[Hidden]

Hi

I really hope you feel a little better soon.

I was referred to one pain team who were useless but I'm now under another one who dies seem ok, will wait and see, he's referred me for injections. I have fibromyalgia plus many more conditions. I've had sciatica on and off for weeks but recently my right bum cheek went very sore, then numb, pins and needles and then site after sitting, standing or walking for no more than 5 minutes. Went to my GP on an emergency, everyone was brilliant, they said I might have to wait a little while so made me a coffee!! She then took me in very quickly and has referred me to orthopaedics . This was 2 weeks ago, I've got MRI tomorrow and consultant on the 10th. I've written this to give everybody hope plus if you are having problems you can if you want show my reply, it might just make them move!! Some pet complain at our drs but I can only go off how I've been treated. They have all tried to do their best for me. Love and hugs to you all. Love and hugs Lynne xxxx

[KakaB in reply to Hidden]

I feel like a need a new doctor. The ones at my surgery just don’t seem to know what I’m trying to say about how my pain is. They just blame everything towards me having a baby or being depressed, when mentally I felt great, I felt happy and content with life... it’s just the pains and aches! I just want a bit of normality, because I feel like I’m getting dragged down mentally now! I know I’ll never be 100% but I figure being relieved of some of it will massively improve me. If you don’t mind me asking what injections is it that you receive? I’m gonna enquire again with the GP whilst I wait for my MRI (panicking about that)

Thankyou!

K xxx

[Hidden in reply to KakaB]

Hi

I haven't had them yet. My neuro/ gastro consultant at withington was going to insert electrodes into me but he said they wouldn't work for me so has referred me to the pain clinic at wythenshaw to have nerve type injections injected as my consultant said the nerves were cut after an op I had t years ago!!. Not quite sure what it entails. I was sent a form to fill in about where my pain , I had to star in a drawing of the body, I nearly filled it all. I have Nash ( non alcoholic steatohepititis caused by meds from my drs) it was this consultant who referred me to withington. I do think they will only inject around these nerves, will have to wait and see! Sorry to rabbit on. Take care Lynne