Allodynia/Fibromyalgia

Hi, I've just discovered this forum. Have problems with itching, burning skin very sensitive to touch - seams on clothing are a nightmare (have to remake everything and turn undies & socks inside out). Most clothing feels like sandpaper rubbing against my skin - especially on arms, torso and ankles. Have suffered for at least 10 years, spent a fortune on every cream in the chemists and still no relief. Doctor says he's never heard of this and was beginning to think I'm mad! Now, I've found this site - I cannot believe there are others out there suffering the same thing and feel a bit more sane - thank you!

Also have problems sleeping, i.b.s. and numbness in fingers.

Any help/ideas would be greatly appreciated please.

Have taken Amitryptyline & Nortryptyline for migraines but they make me feel sick.

Best wishes to you all.

eujo

xx

16 Replies

oldestnewest
  • Hi eujo......Welcome.....so pleased you have found us as you will get so much useful info on here and not only that but friendship and support and a wonderful laugh when you most need it....I will let all the others point you in the right direction but have you seen our Mother site? Hope to speak again soon......Gentle hug xx

  • Hi Trikki, thanks for your reply. Will have a look at the Mother site. I'm feeling better already - I thought I was the only one out there with my problems.

    Thanks again.

    eujo

    xx

  • You are never alone on this Forum....day or night!!! xx

  • Hi eujo17 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    I'm sorry you are suffering so much with awful itching. I must admit, I'm very much the same & i have 3 steroid creams for various body parts lol. It's so frustrating isn't it ? I get quite intense head itching aswel & i have the skin sensitivity also but not so bad as you get it.

    Amitriptyline is a widely used drug for fibromyalgia, I've taken them for years & they do help me. Do you take any other medication, Pregablin or gabapentin?

    Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

    fmauk.org

    Peace, luv n light

    Jan ☺

    PS. I advise you to lock your post to keep info safe from internet. Pls. follow this link to simple instructions .You will get more replies on a locked post too.

    healthunlocked.com/fibromya...

  • Hi Jan, thanks for your help but I'm not sure what a locked post is. Should I just reply via the 'healthunlocked' site - is this what you call the 'mother' site - sorry, all this is very new to me. I'm using my husband's email account. I also have head itching. I've not used Pregablin or gabapentin. I haven't been diagnosed with anything. I'm waiting to see a dermatologist at end of March (which I've had to press hard for). I've just come across my own diagnosis by searching the internet and trial and error and am having to self diagnose/treat as I've had no joy with G.P.s for the last 10+ years. They have offered anxiety counselling but the only thing I'm anxious about is the skin problems, etc. I'm suffering from. I've spent such a lot on every cream in the chemist and am getting so desperate with the itching rash and burning skin sensitivity I started using Daktarin angi-fungal cream on my arms yesterday. It does seem slightly better today, but watch this space! I have to unpick all the seams on tops, etc. and turn them as I can't stand the overstitching on the seams - they all irritate and give me a rash.

    Anything I can't unpick I have to wear inside out - very glamorous!

    Thanks once again.

    eujo17 (Josie)

  • Hi eujo17 if you go to my reply above & tap on the blue link, it will open another window where you will find full instructions on how to lock your posts. Open posts can be assessed on the internet & open for anyone to read.

    The Mother Site is the main website my friend, this is just a forum, there are other forums that are also linked to Health Unlocked. You will find all the information about Fibromyalgia on the Mother Site via the link I have given you above.

    If you need anymore help just let one of us know and we will assist you. If you look to the right of your screen you will see "Pinned Posts" under this you will find links to help you navigate the forum,

    Can you not change your doctor, ask at surgery if there are doctors there that specialise in fibromyalgia.

    Luv Jan xx

  • Hi eujo17 and a warm welcome to our friendly fibro forum where you can get advice, help, support and understnding, along with a chuckle or two to lighten the day.

    Extreme sensitivity is a well known symptom of fibro and members vary in their degree of sensitivity, and yours is exceptionally bad.

    I am sorry I have no knowledge of things to help relieve it, hopefully some members will come along with ideas.

    I do hope we see you joining in the forum.

    Kay

  • Hi Kay, thanks for your welcome. Will keep reading.

    eujo17

  • Hello eujo17

    I just wanted to wish you a warm welcome to the forum :)

    From what I can gather you have not been diagnosed with Fibromyalgia?

    If not, make an appointment to see your GP and ask for a referral to see a Rheumatologist. They are the Consultants that specialise in diagnosing Fibro.

    It can take years to get a definitive diagnosis, but it is important that other conditions like Lyme Disease, Lupus and MS are ruled out first because the symptoms are very similar.

    It's a shame that you could not get on with Amitryptyline as it not only helps with pain, but sleep and low mood too.

    Wishing you much peace

    Lu x

    Administrator

  • Hi Lu, thanks for your kind welcome.

    No, I've not been diagnosed with anything - G.P. thinks I'm making it up and has offered counselling for anxiety - its the skin problem which is causing me to be anxious and frustrated. I have appointment to see a dermatologist in 6 weeks so am waiting to see what he comes up with. I've self-diagnosed at the moment and am so relieved to have found this forum and to find that there are others out there with similar conditions but do sympathise with you all.

    Many thanks for your help.

    eujo17 (Josie)

  • I can commiserate with the skin thing as somedays even seeing a vest that is a but close to the skin is too painful. All my pyjamas and vests are one size bigger than needed and haven't been able to wear a bra in about 7 years. I cut all the labels out if clothes that are next to my skin and run my fingers down the seam before buying to make sure they are soft. I find clothes made out if natural fibres rather than synthetic material much more comfortable and wear a shirt sleeved T shirt under jumpers.

    This forum makes you feel less alone with this horrible illness as we all understand what you are going through even though people main symptoms might be slightly different. Look forward to your future posts.x

  • Hi rosevine, it's a nightmare buying clothes isn't it. I'm fed up of remaking them and redoing all the seams - my sewing machine is on 'fire'.

    I have to cut all the labels out too and anything with elastic next to my skin is a real problem and gives me a burning rash. Everything inside out again - to avoid the seams. I've found that t-shirt material is so rough nowadays and feels like sandpaper - do you have any tips on shops/stores who sell some with really soft cotton material? I've given so many new ones away to the charity shops as I can't wear them.

    Take care

    eujo17

  • Hi eujo and welcome to the forum, I also have the same symptoms you have mentioned, I cut out white bread and potatoes when my IBS flares but that's only me different things for different people . I don't have any wise words but do really commiserate with you. Its not easy x

  • Hi Meg, thanks for your kind welcome. My ibs has been a problem for some years and seems to have been continuous since late last summer. Greens and Fruit are my problem - I love fruit but can't eat it. General advice seems to be to eat lots of wholemeal and bran but that just gives me pain and problems. I've just started gluten free bread and changed from soya milk to rice milk and am trying to cut down on sugar. I've also started taking a little Fybrogel daily and do feel a bit better. I've not heard about the potato reaction but will bear that in mind - thanks.

    Take care

    eujo17

  • Morning Josie , I also have problems with wholemeal and bran, it creates a lot of wind which is soo embarassing even if you have a visitor. I have been taking a wrap, banana and almond butter at lunchtime and that seems to be ok with me. I can have some fruit but the like of an apple - well that's just not nice :) My name is Barbara, I had chosen the name madmeg for the after a mad wee staffy I used to have some time ago, her memory always makes me smile.

    I must have a go at the soya milk xo

  • Hi eujo17

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of how you have been struggling and suffering. The best Migraine treatment I have ever had is a drug called Sumatriptan it shrinks the blood vessels going into the brain and thus reduces the pain. It could be something to talk to your doctor about to ascertain if it is suitable for you?

    I have pasted you a link below to the *NHS Choices cache on iBS treatments, so I truly hope that you find this useful:

    *NHS Choices:

    nhs.uk/Conditions/Irritable...

    Your numbness and skin irritations could be the result of Allodynia? But nerve damage can also result in this? However, I think you may need to shop around with your doctors got get anywhere from what you have said about yours? I have also pasted you an excerpt below from the **Wikipedia cache on Allodynia:

    **Wikipedia:

    **Allodynia is a clinical feature of many painful conditions, such as neuropathies, complex regional pain syndrome, postherpetic neuralgia, fibromyalgia, and migraine. Allodynia may also be caused by some populations of stem cells used to treat nerve damage including spinal cord injury

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

You may also like...