Tillytrots: Does any one who suffers... - Fibromyalgia Acti...

Fibromyalgia Action UK

56,280 members64,731 posts


Tillytrots profile image
20 Replies

Does any one who suffers with fibromyalgia suffer from itchiness as I am and I was wondering if someone has found a cure as it is driving me mad also I have the fibro rash of bruises I have creams and my Gp has put my fexofenadine up to 180 mg I cannot put blankets or anything warm as it makes the itching worse I hope some kind person can help.

20 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Hello, cannot bare wool on my skin for too long so once I come back from being out in the cold it’s layers off. I ve noticed this since I’ve had fibro I’m either too hot or too cold 🤣, I keep E45 cream for legs arms etc , I would ask for a call back from the doctor too see if there a anything else you could try xx

Hazel_Angelstar profile image

There can be many causes for itchiness - antihistamines can sometimes help, as can a good moisturiser sometimes. That's the main treatments I'm aware of

Merrrm profile image

I too have this. Blooming drives me bonkers. Anything at all can cause huge welts to appear that itch like fury. A carrier bag or handbag loooed over my arm.....guarantees the welts and itches. Clothing....no matter what the fabric, randomly produces the same prob. Anything Sometimess my skin touching another area of skin. I could spend a week talking about this one feature of my fibro! Sometimes there's no rash of any sort just intense itching. Anything at all can trugger it but its worse if I'm particularly anxious.Never happened before fibro that much I know. Fexofenadine 180mg every day does help though. Have a chat with you Gp about prescribing it ....

I'd be very interested if anyone has any theories on this.

Charr53 profile image
Charr53 in reply to Merrrm

I have the same problem!! Bruising and itchiness and welts exactly as you described! Thank you for describing it to a tee I couldn't have done it better! My pain is so intense at the moment thank u..

Merrrm profile image
Merrrm in reply to Charr53

You're welcome. I can remember the 1st time the welts appeared.....was while carrying a shopping basket on my wrist at a Co op....I asked the staff if they'd cleaned the handles with anything....they laughed and said 'cleaned the handles hahaha' apparently they never did this...ever! Yuk! Bet Covid changed that.

Tillytrots profile image
Tillytrots in reply to Merrrm

Thanks for your reply I am on fexofenadin 180mg my GP has just put it up as you say you think have got rid of it and it pops up in another place so annoying I don't think enough gets done about fibro I suffer with chronic pain syndrome fibro just one of my pain problems and the weather does not help I am 71 just can't get no were sorry about my moan but I am glad for this site as you think your on your own don't you thanks again.

Katiepc24 profile image

I suffer from itchiness as well. It is mainly on my arms and feet. Drives me mad at times. I find putting a cold wet flannel on the area helps smooth the itchy

Emaych61 profile image
Emaych61 in reply to Katiepc24

I used to get really bad itchiness on my feet. I could always tell when it was coming as well as there was a massive tingling sensation before it started. It used to be particularly bad at night (I used to have a bucket of cold water by the bed so I could just dangle my foot out to cool it down) and although I could (and did) get it at any time of the year, it was much more likely to occur in winter.

It took years to work out what was going on. Because I’m known to have allergies the GPs went down that line far too often, but nothing prescribed did any good. It wasn’t until a friend of mine was describing her experiences with Reynaulds syndrome that the penny dropped that what I was having might actually be down to circulation. Her advice to me was to keep my feet at a constant temperature as much as possible to see if that helped.

Problem solved, even if it does mean sometimes wearing two thick pairs of socks and fluffy slipper boots on top in winter.

Dipydoo profile image

funny enough I do but never put the two and two together ❤️❤️

E3178 profile image

I recommend eurax cream. Over the counter from Asda. Not too expensive.

Patdoyle profile image

yes I too get terrible itchiness. Eurax cream and moisturiser helps

dondons99 profile image

hi sorry to hear that your suffering with itchiness it’s horrible i too have fibromyalgia and also suffer itchiness still haven’t found anything to stop it but I am hopeful take care

Wobblygirl profile image

My limbs itch terribly especially shins+ankles at night. Hideous scratching for so long...Other bedtimes, it doesn't happen at all!

No idea why it links with fibro but it is a painful extra. Bn given a tub of cream by GP but it doesn't absorb v easily so it's not much of a solution for me...

Does anyone know why it occurs with fibromyalgia???

Cheers, Wx

Tillytrots profile image
Tillytrots in reply to Wobblygirl

Hi Wx I looked it up on line and it is part of fibro also the bruising they call it fibro rash and it shows pictures of various people with it different variations they said the itching is caused by nerve endings hope this helps a bit it's a terrible thing I wish someone would come up with a cure but it seems to go un heard Cheers T x

Sarahvit profile image

I inherited the itchies from my mom decades before fibromyalgia entered the scene. Having a faithful loved one who would literally scare your back when it itched. I had that with my twin sister for 18yrs came in handy because we both had the itchy backs. I need to cut this short to make my 1:30pm appointment but in my 60’s I find when it gets too back I will take a Benadryl and I have a back scratcher. If you have dry skin moisturizer will help too. I haven’t hit that point yet just my hands.

Al10 profile image

I used to get really itchy for seeming no reason. I'm also a sensitive sort. I suspect most Fibros are?

If I were you, I'd go through all my shampoos, soaps, gels, creams and with glasses on and read those darn labels. Also, think about your laundry detergent and other cleaning products Have there been changes? Is it designed to be mild? These days, I make my own cleaners. Cheaper, less harsh, and just as effective! Nice huh?

I spent seeming forever over the years looking for all the nasty itchy culprit/s. My head itched, my mouth, eye drops were the very devil and the specialists had no clue. It was trial and error. Reading what is in your meds, is an eye opener. Ever imagined sticking Lanolin/Sheep grease in your eyes? I hadn't. That is a major allergen which I already knew I was allergic to. No wonder my eyes were red! RTFL! Read the ****ing Label stupid? I did feel pretty stupid after that. Except in my defence the small print ingredient list was teeny tiny? Yup, I'll own it. I was stupid.

I had to join multiple dots and eventually found the last problem. It's likely different for each of us. For some, like me, it can be multiple things. Beware Sodium Laurel Sulphate for example, esp in toothpaste where your mucus membranes are sensitive and thin. It is a harsh chemical and used is so many preparations. Anyway, the last major thorn in my side finally was a little known PEG. Poly Ethyline Glycol. There are multiple versions/names which make slip ups inevitiable but at least, mostly, I can avoid it.

If you read up, it is in multiple products. No longer can I simply borrow products when I stay round at friends. That lovely smelling fancy shower gel and Shampoo left for my use in the shower? I can't just slather it on and go. Toothpaste? Ditto. Icecream? RTFL! It's even in most eye drops.

Your best bet in managing all Fibro is to keep things simple. Simple ingredients and a short list of them. Lots of us react to fragrances too. All those synthetic chemicals combined to smell so fresh and delicious? It's hell for sensitive sorts. Can trigger major headaches and skin rashes. It's a jungle out there so be careful.

Oh, and don't forget how hormones fluctuating, will play a role in your sensitivity?

Natterstitch profile image
Natterstitch in reply to Al10

Hi Al10

Natterstitch profile image
Natterstitch in reply to Natterstitch

I have very similar problems to Al10, the "itchies" are dreadful especially at night. Over time I realised that wearing any manmade fabrics made it much worse and have gradually changed all of my clothing to natural fibres, no pretty lace either. For years I've always had to sleep with the quilt off my feet, this helped a lot but cold arms and feet.

I have now got a quilt made of wool. It's great and much lighter as well, I have also used 100% cotton covers and sheets for ages. The combination works very well for me.👍

Southport-beach profile image

Hi Tillytrots,

I get really bad large itchy patches on my arms and legs without any spots or other obvious reason. A doctor at my surgery specialises in skin conditions and suggested that is to do with increased sensitivity of the nerve endings. It can last up to two years and my case recur every so often. She recommended a cream containing 1% Menthol. When the menthol evaporates it has a cooling and calming affect on the skin and nerve endings. The cream I get is on prescription and called Arjun Cream. It may be available under another name & off prescription but I am not sure. It doesn't work immediately but after a few days it really calms my itching. I was scratching like mad and if I didn't scratch the itching go so bad that it felt like my skin was on fire! I find that the cream really helps.

The doctor also suggested applying something cool eg frozen peas wrapped in a towel & to slap the skin very gently rather than scratching as this avoids damage to the skin surface.

I hope these suggestions help.

Good luck.

Astra67 profile image

I use centraben and the piriton I take every day and I have a eumovate ointment

You may also like...