Fibro diagnosis

[Lana1976]

hi everyone I was recently diagnosed with fibro & all i can say is i have never felt pain like it & i've had 3 kids. I am sore from the top of my head to the soles of my feet. Does anyone have any advice for me? I don't know much about it at all.

When i think about it i have been suffering in pain for the last 5 years now and was worried it might be something serious. I did have xrays and ultrasounds,the xrays showed i have athritus in my left hip but i have pain in my shoulders,collar bone,back,right hip arms & knees & fingers so i thought maybe it was athritus causing it but gp said i was too young for it ( i am 47).

I was very unwell for a few days so i made an app with my gp surgery. I told the gp my symptoms and told me he agreed with another doctor that it was fibro. Now i have this diagnosis i am trying to understand and control it if i can. I cant do anything now with my 6 year old son i struggle trying tio help him get dressed for school,i can't take him to the park because walking hurts alot,i can'nt walk very far at all. I have a 16 yr old daughter who is amazing she is a great help to me and my 26 year is amazing too he helps whej he can. If i did'nt have them i dont know what the situation would be like.

I would appreciate any advice. Thank you for reading my story.

[Tanya-B]

I totally understand your pain. Some days I have to crawl into bed at 5pm for an hour just so I can make dinner. I put the electric blanket on full blast even when it’s hot outside take an assortment of pain killer and just lie there until I can move . I lie there and try to analyse the pain and talk to myself not quite believing how excruciating the pain can be.

I have a hectic lifestyle and care for a mum who had just had a stroke and brother who has autism. I run a Buisiness but there are days my head is so fuzzy I struggle to cope. But it’s the pain that is so difficult to deal with.

Take vitamins they can really help boost your energy.

Vit D B12 and magnesium. Take advice from other members on here.

Have a warm bath with magnesium “ Epsom salts” that’s a life saviour for me. Really cheap to buy.

Sending big hugs to you

[SaaraMc]

They said you’re too young for arthritis even though an x-ray showed you have arthritis, and they diagnosed fibro and sent you away without any suggestions? Yikes, your GP is worse than mine! At least I got a leaflet, a suggestion to join online support groups and the name of a medicine to look at (duloxitine) and she would have referred me for occupational therapy but I’m already referred and waiting for that for something else.

As counterintuitive as it sounds, apparently what helps the most is gentle exercise. So I’m told. You also need to pace yourself, rest when needed, no ‘pushing through it’ or you’ll end up worse. There are medications - duloxitine, pregabalin, gabapentin, amitriptyline are the ones I’m looking at but I already have a prescription list as long as my arm so possibly these are not first line treatments, I’m not sure. Paracetamol, cocodamol, ibuprofen. Hot or cold therapy - hot baths, hot water bottle, cold showers, cold water tank, wild swimming, ice packs. I stick my hands under the cold tap for as long as I can bear, it lets me at least button up school shirts.

[Brigga]

You will have better days. Try to rest as much as possible while your little boy is at school. Try not to feel guilty. Find low energy things you can do with him like reading, puzzle books, drawing. You’re probably doing too much at the moment. I was in constant pain when I was working. My pain improved about a month after leaving my job. Don’t despair. Lots of people benefit from meds like duloxetine. It won’t always be this bad x

[Yassytina FMA UK Volunteer]

Hello, sorry to read this ,I am glad your older children are helpful they sound amazing. Very hard with the little one for sure, me personally I feel like the tin man (I say too my friend ) as in the mornings it’s hard too get going , they say too stretch and keep moving (easier said than done I know☹️) Don’t think I could manage without the pacing method, alot of us try here, it’s making yourself take breaks too switch off for awhile ,with a drink say and

take a pause and never feel quilty how many times you have too do this. I swear by my soak in the bath early evening , it does seem to help . I do use some muscle rub as it’s always my shoulder blades, neck , lower back , calf muscles, (can always ask your pharmacist for advice especially if you take any medication)has doctor started you on anything yet that helps with your pain ? The forum is good to have a chat and read members posts, I’ve learnt alot from being a member . Xx

[Lana1976 in reply to Yassytina]

Thank you for your reply,i am struggling alot at the moment. I have had a constant sore head this past week which is new. So not had a very good couple of weeks. Had my little mans football launch Thursday gone & i struggled walking to his school which is the same street i live in (he got into his school team) i was in so much pain that night. I feel so useless to my youngest now.

[Yassytina FMA UK Volunteer in reply to Lana1976]

Glad he got into the team 😀, it’s so dam hard for you and a lot here will understand your daily struggles, a it grows older he will realise how much love you have too give, daily chats and mum giving him her full attention even though sometimes you won’t always be able too stand on the sidelines but the conversation s you have about the match when he comes home xx

[Lana1976 in reply to Yassytina]

Oh i love hearing his stories he is so commical atm 🤣 thank you x

[Yassytina FMA UK Volunteer in reply to Lana1976]

Oh brilliant , when they make you laugh 😆, my youngest grandson will be 7 in January , I forget he is that age as he is so grown up and cheeky too , always has an answer for everything 🤣@the apple of my eye😄as they will be going away half term i am doing Halloween tea and hidden up some goodies along side their little bag that comes out every year. I’m pacing more now as they will come later so good time too read on the forum and chat xx

[catherine19611]

sorry to hear that, but welcome to our world, there are a lot of people on here who are lovely and very happy to help in anyway they can. just remember that we all know what you are going through. not everybody has all the same symptoms

your gp sounds like they understand or at least accept that fibromyalgia is a real thing, you are lucky, there are so many who dont. i went to see one at the practice where i used to live, i had to wait 2 weeks for an appointment, as soon as i went in and mentioned my fibro, he said, let me stop you there, there are those of us who dont believe that it exists and i am one of them, make an appointment to see Dr S, goodbye. i had to wait another 3 weeks to see her and when i went in i told her what he had said, she said, that is why i have so many fibro patients. she wasnt pleased. so, be aware this does happen

[Lana1976 in reply to catherine19611]

I have been lucky with my gp practice,its the same here in scotland wait so long to be seen to be chased back out the door with no help. I sat and thought about my past pain and how long i have had it its a good 10 years or more but now i have steps to take to try make daily life a bit easier. I also see an occupational therapist.