I can see it’s not just me having a flare I’ve not read very much about hyposensitivity with fibromyalgia on the internet what i had learned I’m not CRAZY lol which is a relief my skin burns & stings at the same time the way i describe it is like sitting on sandpaper with skin like wafer thin. Today is a really!!! bad day with it not to mention my general pain i have daily and i know you all suffer with your pain daily to. Does anyone else suffer with this sandpaper thing or hyposensitivity? I’ve not met or spoke to anybody that suffers with it just other symptoms of this horrific fibromyalgia, my bed sheets have to be bamboo material other wise I’m crying and moving all night long, not so lucky with my clothes cotton or silky but can only tolerate them for so long. My G.P just says your on a lot of medication as it is and we don’t really understand it. It’s like banging your head on the wall they never recommend any groups or forms like this there is no support or nurses to give you advice like trying different things. Sorry for the long essay once i started typing i couldn’t stop lol sending love and healing to you all
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Donna_39
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Hi Donna unfortunately I have the same thing in my bottom. I have had several treatment with no success. I have just had steroid injections last Tuesday so it’s very early days to know if they are going to work. I am seeing a specialist today at the hospital and I am going to mention this to him. At first I thought that it was like sitting on sandpaper and now I say it’s like sitting on broken glass when the pain gets really bad.
I will let you know how I get on and hopefully can be off some help to you. I only have it in my bottom when I sit down and it makes me feel so miserable. I truly feel for you as I know first hand how it feels. Take good care of yourself. Love and hugs 🤗🤗🌹🌹😘😘
Hi Jan thank you for replying i don’t feel alone now with this. I didn’t know they can try steroids for this to be honest the pain doctors in my town really don’t have a clue how to treat it or any of my fibromyalgia symptoms. Yes please let me know how how you get on with the specialist. Take care to lots of hugs and love ❤️💜❤️
Hi sweetie I truly feel for you and definitely can relate to your pain. As soon as I find out what can help take the pain away I will definitely get back to you. I will send everything to you by a private message if that is ok with you. Try and take good care sweetie. Sending you lots off warm hugs. Jan 🤗🤗🌹🌹😘😘
That is so kind of you hun, yes you can private message me anytime you want even if you just want to have a rant or talk because of the pain and frustration we are all in the same boat and it helps to chat. I was just reading your post about how you have had to have two scans before they can say how to help and this pain is coming from your back that’s what my liver doctor said some of my pain is in my back because of my two slipped disc’s they like to blame it on other problems you suffer from that can be seen not what can’t be seen, these doctors are like blinking scientists. Sorry about the rant it just really frustrates me when they blame things on your back think it’s because that’s the only thing that they do believe is possible even if its not seen. Fibromyalgia can’t be a possible illness in their eyes even though it is very common now. Wish you lots of luck and sending healing your way and love and hugs 🤗❤️🤗💜🤗
Hi E3178 thanks for your reply I’m sorry you to have this horrible thing as well, your right about your skin feels like insects are crawling on you. Yes i to have have big problems with sleeping it’s all linked together. Thank you for sharing it does help when people just share a bit stops me feeling like I’ve gone crazy, take care of yourself and good luck with the new medication hugs 🤗
I can totally relate to what you are describing and it not very nice at all is it? I just wanted to add that I think this is related to Hypersensitivity (>more) rather than Hyposensitivity (less<), as most people with Fibro seem to suffer with both hyperalgesia and allodynia.
hyperalgesia – when you're extremely sensitive to pain
allodynia – when you feel pain from something that shouldn't be painful at all, such as a very light touch
Hope this helps in case you'd like to speak with your GP again about these symptoms. Have you tried any pain relief creams prescibed from the GP, like Capsaicin as you mention the GP saying your are on a range of medications already. This cream is reported to naturally reduce substance P (which is excitable to pain) which we apparently have 3 times the amount compared to healthy people.(See Dr Clauw research & books)
Some people have reported it to be beneficial, however we are all different but it might be worth considering trying (link below). If you do, a little word of warning it is not really a good idea if sensitive to medication and a 24hr patch test may be best - as made from hot capsicum peppers!
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Misdiagnosis of Fybromyalgia - please read
SAT ON RECEPTION AND STILL IN PAIN ARGHHHHHH
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It just gets worse!
