Friendly advice : Hi I'm new to this... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Friendly advice

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Hi I'm new to this and find it difficult to talk to people, over the few months the pain has been getting worse in the last week its got so bad that I just feel like crying, even walking bare foot on the grass is like walking on pins. My joints burn and feel like they are on fire. If someone pokes me it feels like they have punched me, I've not had a full night's sleep in nearly 3 years which means I'm constantly tired all the time. I was speaking to my manager at work and they said it sounds like you have Fibromyalgia. I suffer from anxiety and depressions and all in all now feel really scared about it all. Has anyone got any friendly advice for me please. Thank you for listening πŸ˜”

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Hello, and a warm welcome to the forum.

It does sound like fibromyalgia, but of course we're not medically trained, so we can only make suggestions, just like your work manager.

I would suggest that you write down a list of all your symptoms or keep a diary for a few days and then see your GP. Show them your list and ask them what they think. If they aren't forthcoming or try to fob you off ask them would it possibly be fibromyalgia (most GP's prefer you to suggest it might be something, rather than saying that you think you have such and such). Ask for a referral to a rheumatologist, as this is who diagnoses most of us. If you can, take someone with you when you go to the GP for some moral support and back up.

Good luck. x

in reply to M0AL61

Thank you so much for your advice, just trying to ease the pain at the moment. xx

I so understand

the feeling of walking on pins that's super painful. I also experience a feeling of someone driving pins into my scalp when I touch my hair. I have been placed on gabapentin for nerve pain and that seems to have helped a bit. (I'm in NZ and it may have a different name but if you google it you should be able to work out the name for it where you are). I've done that before with drug names mentioned on these forums seems each country has its own manufactured name for meds.

I think you need to see your doctor and get. Diagnosed. The pins and needles pain I feel is actually peripheral neuropathy and the burning joint pain is arthritis although I do also have fibromyalgia. I don't sleep well myself so understand what that feels like. I'm on a cocktail of drugs but still don't sleep well and some drugs have multi functions so I would urge you to see the doctor and get a cocktail that works for you.

Perhaps the fear is fear of the Unknown?

Hi crazysnail 1,i understand your pains as I suffer with peripheral neuropathy and have done for several years, at first I couldn't understand how the body can cause constant and severe pains, which I hasten to add it varies in different ways, the pins and needles are constant, sometimes it feels like red hot pokers are coming out of every bone in the body, you name it everywhere, then the constant leg muscles twitching, or feeling like small fish swimming in the veins, and of course depressed and sleep patterns are all messed up, so various things can bring on PN, chemotherapy, diabetes and even large amounts of alcohol, so I suggest a chat with your doctor and perhaps getting an appointment with a specialist and then you'll get a clearer picture of what's happening with your body, it's a long road to try and get a cure, and even getting a simple blood test to check for B12 deficiency might be worthwhile, the condition is not normally cured, but certain tablets may help, and that can be a long process to work out, I've found out that getting stressed out makes my symptoms excelerate, so explain to your nearest and dearest not to give you unreasonable requests and avoid getting into long lasting arguments with anyone, so every one else can go home care free and normally us humans find it difficult to detach ourselves with things that happen on a day to day basis, all this does is affect your symptoms, so a peaceful lifestyle helps, so I wish you calm and safe waters ahead, thanks


I'd start a pain diary so you can take it to the Dr it does sound like fibromyalgia to me yes,especially walking on grass thing,even when I have a shower it mostly feels like its raining nails on my back because of the sensitivity.

Tell folks could they stop with the poking? If it turns out you have Fibro you will need to keep a good sense of humour! Hard when you are sleep deprived.

Hello I'm sending you gentle hugs it is a scary time to be struggling with pain all the time with no explanation I myself have fibromyalgia I'm 44 and was diagnosed nearly 3 years ago although looking back I had been ill for at least 5 years prior to that I'm not a doctor but I would suggest that you go to your GP and ask to be referred to rheumatology your symptoms are very similar to mine there is Hope although it's difficult at times to remember that but there are good days and bad days the best advice I could give to you would be GO EASY ON YOURSELF! it can be very difficult to accept the limitations that this horrible disease put on your body don't beat yourself up if you can't scrub the toilet or wash the kitchen floor don't beat yourself up if you can't attend family get togethers or celebrations it's not a choice our bodies are uncooperative with our minds and there are days where you just need to rest up I have found some sort of balance and though I'm on lots of medication I do still enjoy my life I try and take pleasure in The Small Things and also I try to be good to myself I'm wishing you all the best

Thank you so much everyone for your kind words and advice I'm making a doctors appointment as soon as they open Monday morning so I hope they can fit me in ASAP. I've got the support of my wonderful family. I just feel that I'm letting them down because I can't do the things I usually do, because of the tiredness and pain I find it difficult cooking a meal at the end of the day, I'm also worried that this will mean I might have to give up my job if it gets any worse and I love my job I'm hoping the doctor will be helpful and understanding not try and fob me off with some rubbish. Thank you all again xx

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