Does your FM migrate across your skin?

I have been taking Amitriptyline and Lyrica for my 'restless legs syndrome' where my skin is so sensitive at night, I cannot bear the sheets or pillow cases touching me, and can feel every crease - I also now wear PJs to separate myself from my bedding. I sleep on pillows mostly, with only my backside and back on the mattress. This feeling used to be on the skin of my thighs and at night only or my worst days feeling bruised.

But now the skin of my knee area is feeling odd. I live in trousers and that is becoming increasingly difficult to cope with. The pressure of a bent knee and the fabric touching my skin or the movement of the fabic - I don't know what to do. I guess another visit to the doctor and an increase in my meds are called for again as my right knee is going the same way. My knees themselves are complaining more and more now as my hips are letting up for a bit.

My flat shoes are too clumpy for skirts and I am becoming depressed, [pmt doesn't help].thinking not only do I have to put up with FM but will also have to look awful.

I think it might help to know others are feeling the same or similar?

18 Replies

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  • I have arthritis so have to have insoles made to fit so any nice shoes with heels are out so are sandals and . Well I live in jeans and trainers... Oh how I wish to be able to wear a skirt but a skirt or dress ..and trainers... Pahhh... Yes I have patches of skin that for no resaon suddenly become so sore to the touch I have to put on different looser clothes , my patches appear anywhere and last from minutes to days .....

    So you are not alone ...

    VG x

  • Thank you. I was feeling very alone with this. You have helped, and although you are called grumpy, you made me smile with your wit.

    I too have arthritis, osteo but just a little. FM makes it seem worse doesn't it. My hands are behaving at the moment and my hips have calmed down too, so I should be happy, but the skin problem is troublesome isn't it!

    Looks like I will be wearing a skirt soon - but with lumpy shoes that look okay for work with work trousers, but not with skirts. I do have some dress sense left, though thats hard at 17.6 stone ;o(

    Oh well. Thanks for your reply, I appreciate it.

  • Hi S j

    long time no speakles sorry if it is me i not sure.

    anyway yes i know the feeling well, i wear my pj's in bed too and sleep on my back like a soldier as its difficult to sleep on my side , i have a shaped neck pillow memory foam i cannot live wihtout yet love having piled high pillows, but i am so stiff and my neck is a killer if i dont use my special pillow and if i turn my head to sides thats quite an issue too as i slowly have to move back, i always feel like eveything is nipping me ? is the feeling you have ? always moving my clothes and sheets too .

    i have thick insoles in my boots that i live in!! omg i used to have a pair of shoes and boots for each day, now i wear the same ones day in day out for the comfort i feel like staying in a time warp and i dont want to end this way as i love to change outfits and shoes but its comfort and the nipping.

    restless legs i know only too well also and my arm only yesterday all one side and other day i had severe sciatica to extent could not put my foot on floor without herendous pain , the hips have been really playing up and base of spine, i have a completely flat foot on my left which goes numb and white quick. the other goes blue and swells up all the time.

    so this is too much i know jibber jabber i do .. i also on lyrica on 500mg which is doing naff all at minute as think a cold is setting in my nose is like a tap with a faulty washer. its embarrasing too! i catch it drip and am out in public because of course i have no idea its doing it.

    i have not been diagnosed with any oesteo or RA but i believe i am riddled in it as everything is a problem everywhere no matter what i do be it butter a slice of bread or pick something up , my hips, my neck shoulders hands , you never know whats causing what really xx

    hugggles xxxxxxxxxxxxxx caroline

  • Thanks Caroline. Your life sounds complicated and enfuriating. I do hope you are managing okay. I really appreciate the time taken to answer me and it does help to know you are not alone, even if a cure cannot come from it. Push on and keep smiling. I hope the sun shines soon and that it eases things for you during the day at least.

    Soft hugs

  • Hi Sarah Jane, I don't know whether this might be if any use to you, you can get, oh my goodness, forgotten the name for them, they push the sheets/duvet up so that it does rest on your legs at all. Also you can buy a sort of pillow which fits between your knees and makes lying on your side, if that's what you like to do, a lot easier as there is no pressure on the knees.

    I do get sore skin, but it is mostly limited to my head, , somedays I can't bear to even touch my head and crushing my hair on those days is out of the question, so I look even more revolting than normal,

    I hope you manage to find something to help you very soon. Foggy x

    .

  • Thank you. I do use a pillow between my legs when my hips allow me to sleep on my side, thank you. Yes I have been thinking of getting one of those frames myself, however I use three pillows to raise my legs, specifically my thighs, off the bed and one of them is to soften the area my heels rest on. Hope you can picture it. Anyway, this leaves me with a mountain for my duvet to cover, then I try to keep the covers raised off my toes, but this means the duvet tends to slip back towards my husband and I lose control of it. I think the frame won't work with this position. Oh, I have to wear bed socks too as my feet freeze as soon as I get into bed! Not easy is it?

    Thank you anyway, I might jsut have to give it a go.

    Soft hugs

  • Joys of sciattica! Its awful when your skin has mind of its own. It is so painful. Mine just travels wherever it wants! Mostly in small of back, bottom and thighs, but had been known to pop up elsewhere. There should be some sort ofcream we could use to numb the pain!xx

  • Another RLS, OA & Sciatica sufferer here along with everything else... I got o e of those bolsters from the Swedish store... On bad nights it get tucked under my knees & my feet get 2-3 cushions to raise them too & we use a light toy (summer) tog and I was good with that...

    Then hubby was prescribed Amitriptyline too! Can't do nothing on my own in this house lol

    Anyway.... We got told about the bar of soap trick...tuck one under the sheet when the bed is having new linen on it and boy!! It only worked! Didn't even tell hubby I'd put one until it dropped out the following week lol ;) Anyways, it worked for us so try it and see how you feel. And also yes, I too have taken to wearing mid calf length nighties with pyjama bottoms due to the skin sensitivity and sadly all the cute heels I had have bee packed away to wear for the summertime although only when propped up in bed lol and I converted over to the much maligned crocs but you know what? I don't care if folk find them ugly cos for me they work :D

    Take care my lovely and wear & do what makes you comfy, that's what matters

    xx

    LLL

  • It might be worth checking with your doctor whether they feel this is a slightly unusual manifestation of RLS or an extreme case of allodynia. There are other meds that are more commonly used for RLS, but the meds you are on are recommended for Fibro (which causes allodynia) so it sounds like your doc thinks it's this one. However, the meds don't work well for everyone, so if you're still struggling, discuss alternatives.

    Perhaps medications to help you sleep more deeply might be appropriate? Ami is often prescribed to help with sleep but long-term can end up causing more disrupted light sleep. Clonazepam is one medication used by a few Fibro experts because it specifically works to improve sleep quality, not just quantity.

  • Thank you, I will.

  • I have always has these funny littlecsorebpatches that appear on my skin and I always thought they were eczema but now not so sure, seems like you can get skin problems worth fibro x

  • Have you asked a doctor about these? Fibro doesn't really cause rashes.

  • I have Fibro and really bad sensitivity on my skin, upper arms and elbows, when in bed I can't stand the sheets on my skin it's almost like a burning sensation :( not nice at all you have my sympathy I'm sorry i don't have any more information on it :(xx

  • I have sores on my legs and arms that just appear for no reason ands recently had "scabs"on my scalp.my Dr said they look like bites so he gave me some stuff to apply which helped but I am left with a sore that stung like mad when I applied the lotion today.,it is on the side and I cant seen what it is,i read this can be a symptom of lupus

  • Thank you everyone. Just a little query - any of you Scorpios? It's just that I recently heard we are more likely to have skin problems!

    I have spots on my face all the time, and they have migrated onto my chest and scalp. I also have lumps which become thick skinned blisters - but doctor blames all of this on block folicles! I do not think he is right.

    There is an area on my left knee which reminds me of falls I had as a child leaving a graze on there, so that when you wore clothes that passed over it, it hurt. Thats what it feels like. But also if I bend my knee and the fabric is tight, it feels like a deep burning, but not like a burn. So hard to explain. Anyway, I have to release the fabric and straighten my leg.

    My laptop is on my lap right now, but I won't be able to keep it there. A lap tray sometimes helps with its bean bag base spreading the weight, but heat builds from me so I have to move it. If I leave my mobile on my leg, after a time I realise that pain is spreading out from that area! Yesterday I was pulling my duvet back towards my leg when I slipped and lightly hit my thigh. The whole thigh reacted and for a moment the pain level surprised me and I held my breath. Fortunately this passed.

    I have two weeks off work for the school holidays and I think a visit to the doctors is in order.

    Thanks for your help everyone.

  • Ask for a dermatology referral if you're concerned about skin issues. Some GP surgeries will have one GP who has chosen to specialise in dermatology and they can help even if you don't need a consultant referral.

  • Hi Sarah-Jane,

    I'm new to this site so please bear with me.....

    I stopped taking Amytrptline, as it actually caused my 'restless/fidgety/horrible feelings to describe unless you suffer from it', then boy, you do know about it, a nightmare, don't know where you want them to be or to put them, they have a mind of their own I think!!!

    Dreadful sensation, so I can empathise with problems your experiencing, it's awful.....

    Have other Neurological Probs. from neck, spinal cord tumour, so pain ATM is dreadful, will write to you when having a better day.

    I too have problems with painful heels, hips, lower back, in fact think I'm ready for the scrap heap!

    I get the 'burning, painful sensation' that you mention, making sleep impossible, regardless of what I use or take, every joint is very painful too, which is why I'll contact you when I'm having a better day after yet another sleepless night, yet exhausted, if only my body would 'give me a break', let me get some rest....

    As everyone on this site has been ever so kind to me, if I can give a tiny bit back, I'll feel better, as it's good to know that you're not suffering alone, as I thought I was until the weekend.

    So big apologies to all those generous enough to offer their help that I have yet to answer, sincere regrets, I will in due course answer your messages.

    I'm taking, have been for years, so need to see neurologist for MRI, as appears to be tumour growing again, I know the symptoms only too well.

    I Take ATM (for damage to nerves from tumour removal, as thankfully don't have epilepsy), they're to prevent my body 'jumping involuntary' & pain relief, so hope this may help.

    Gabapentin 600mg 2-3 times daily.

    Clonazepam 4mg at night & during day when required (most days)

    Morphine Patches 30mg, renew twice weekly.

    Paracetemol & Coedine tablets & Ibrubrufen (daily maximum dose)

    Still can't get any relief from dreadful, debilitating pain, which makes life difficult as I live alone, rely on my 2 sisters to bath, dress, prepare meals for me, which end up more down my front than in my mouth, as I'm unable to lift up arms to get to my mouth & hands are useless.

    I live in joggers or pyjamas, easy to get on & off & yes, as you say, nice clothes, shoes, etc are things of the past, although I insist on keeping them, so that I don't feel as if I've lost everything, silly I know, yet it keeps me hoping, however this way I don't feel as though I've lost everything.

    Lots have gone to charity, I live in slipper boots every day, my bedroom is a tip, hair a mess, rather like myself....It still good to keep a few nice things, even though I'll never wear them again in reality....Never mind, if I can get a little sleep, hopefully my sisters will bath me, wash my hair which will make me feel clean, then perhaps I can get on with making Drs appointment etc.

    Take care my friend, it's good to know that we're not alone, hope that you have a better day today.

    My best wishes come to you, take care, until next time, Cherio for now xxx.

  • Thank you for taking the time to respond. You do seem in the wars there - keep fighting! You managed to say a lot that has helped and I hope saying it helped too? Sorry your body is letting you down, its so unfair that you have so many things to fight at once. I pray that you will get a break soon and a way to find some release. I am online to some in America and they mentioned a Lidocaine Infusion? Any use? Skelaxin? Thats a muscle relaxer, the last one. I do hope they find something to help you as you sound like you need it. Soft hugs and good wishes your way.

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