Chronic Pain

How do people deal with the skin pain that sometimes comes with fibro? Sometimes it feels as if my nerve endings are on fire -it almost feels like I'm having an allergic reaction and am about to break out in hives. My clothes hurt my skin. Anyone have ways of dealing with this?

Hello Bev

The horrible skin sensitivity. I don't find that all or even most FMers even complain very oftem about having the skin pain or sensitivity. I've actually only had a discussion with one other fm patient about my skin being so sensitive. It drives me crazy.
I cannot wear or when I do, any type of tite fitting clothing or even clothing that fits properly makes me about crawl out of my skin. Your only the second fm person that I've found who wants to talk about this issue, so I'm really glad to talk to someone about it.

I have to wear baggy, very soft thin fabric and pajama pants or dusters (house dresses like night gowns) all the time. I wear large baggy sweat pants & stuff like that. I don't know why, but just the material touching my skin is aweful
I hardly say anything to family or friends, I just don't think they will understand what I'm talking about and I think some may think I'm just making an excuse to not get dressed in real clothes every day, so I don't share it.
Last night when I was laying in bed with my hubby, I had to scoot away from him cause I can hardly stand his skin to touch mine and it makes me feel so bad.
I wear my household baggie dusters on most days, but because I'm so sensitive at getting chilled, I have sweat pants & baggie T-shirts or Sweat shirts. I also can hardly wear a bra and that's a real problem for me. It's too tight, even if I put it on the very last notch. I have tried pain cremes with Ibuprofen in them and I've also tried those lidocaine patches to be able to handle waste bands on pants. It's just gotten worse over the past couple of years and I would be curious as to what you do about it and if anyone else has this problem with skin sensitivity, I' would like to hear what they have tried too.

Thank you for asking about skin pain, this is really a troubleing topic for me and It's really bothered my self image of myself and my self esteem. I used to always be dressed well, make up, hair done and now I'm doomed to baggie clothes, no make up and my hair is shorter than most men.

Take care
Betty

Thanks Betty for your reply. I haven't heard much mention of this either and when it is bad it is my most troublesome symptom. I've wondered if it is part of the fibro or an allergy or an enviromental sensitivity.I have to wear thin cotton baggy clothes -makes you feel like a real fashion statement. My skin pain sounds exactly like yours. I think I'm a bit older than you (54) -it gets worse when you start having hot flashes.
My skin pain quieted down when I stopped using aspartame -it was the one trigger I found to be 100% for sure-for me.. So I stopped diet pops, etc. I also find the natural form of one of the B vitamins -niacin- makes it terrbile. My skin was so bad once I went to the doctor on call and when he found out I was taking niacin he said that was the cause. It affects the circualtion and causes "flushing" -I now take a "Cool B50" brand.
Recently the skin pain has become unbearable again -it makes me so edgy and irritable-and wearing even light cotton becomes difficult.. I'm trying to figure out if something chemical set it off. I tried a new sleeping pill and the doctor has taken me off my beta-blocker and baclofen because my heart rate is too low. So I'm suspecting one of these is the cause. I've also wondered about ibuprofen . Anyhow, I'm taking 50 mg of Benadryl at night and that is helping me sleep a bit and seems to be calming things down. It's as if the nerve endings are on fire.
Bev

I have been getting a lot of this lately as well. Skin tenderness and also a burning sort of heat, and then the usual sensativeity. I have been using a clartin cream for the sensative, almost allergic reactions. But the rest, well I try to not have contact with rough materials.

Bev
Nice to hear from you again. When I opened this topic, I was in the midst of a hot flash and was ripping my baggie cotten Large T shirt off and beginning to read. lol
I'm 45, but am in perri menopause (per my doc) I have all the other symptoms or complaints that go with it too. I actually think that my pain meds have forced my body into this situation and I'm not real happy about it either.
My skin sensitivities run deeper than just superficial pain & burning. I get electric burning pain that runs deeper under my skin where material is tigher against the skin or even just fitted material like a bra, some undershirts with elastic or a bra in them. I have to be careful and wear a loose camasole or just a baggie shirts.
I know what you mean about the fashion statement. I'm feeling real attractive too. I'm just grateful that the Lord gave me a very kind & wonderful husband who does not care how I look and treats me like I'm beautiful and have never changed since we were young. He's just wonderful.

Another lady I talked to said that she uses silk sheets and they seem to help her. I have to use soft cotton sheets, but cannot use flannel ones, they will drive me buggie. I can wear silky material on my bed clothes, that's lite feeling, as long as no lace or ruffles. The lace/ruffles feel like thousands of needles poking me.

Mine does not have anything to do with any of hte meds I'm taking, so I'm sure it's the Fibro. When I wear pants with a waste band, the pain will shoot clear down my legs and I can hardly wait to rip my clothes off when I get home from town.
In the summer I like to wear loose cotten summer dresses, with lite scandals, cuz I also have an issue with shoes now too. In the winter I have to wear these swead slippers with a ton of fuzzy soft stuff in them with soles. I found some I liked and bought tan, black, blue, so I could wear them with different colors of pants.

So yeah! this is a real problem for me too. It really sounds bad when I write it all down like this. I have so strangely become accustomed to all the changes I've had to make and am continually making to try and be somewhat comfortable in this life.

One other thing is, I have to cover my recliner, couch & chairs with a soft comforter. I cannot stand most materials on furniture and so I cover them to make them tolerable for me to sit in.

I've taken niacin before and the feeling it gives is different than what I feel, so I don't know. It does make your skin crawl & burn, but my sensitivity is much more painful than niacin and I don't take any of the other meds you've mentioned.

Talk to ya soon
Betty

quote:

Originally posted by Myth:
I have been getting a lot of this lately as well. Skin tenderness and also a burning sort of heat, and then the usual sensativeity. I have been using a clartin cream for the sensative, almost allergic reactions. But the rest, well I try to not have contact with rough materials.

Thank you Myth, it's good to meet you too.
I'm sorry you have to deal with this too, but am happy to find some others to talk to about it and maybe get more ideas in how to live with this irritation. I did not know they made claritin cream. Have you tried any of the pain or aspercreams?
Just curious. I will look for the claritin stuff and try it too. I'm trying to figure out if I have more sensitivity during allergy season and I just don't really know. I am really bothered by my sinuses right now and am fighting with pain & pressure from them too, but it's been making me crazy all winter too?

Thanks for sharing
Betty

This is so helpful. As we talk about the skin pain, I realize I haven't talked to my dr about it -there's always so much to talk about. Myth, what is in the claritin cream? I'm in Canada and in case I can't get it I might be able to find a similar product.
Betty, the past 2 years I've had terrible trouble with my feet too. I go in my barefeet whenever possible -have a closet full of shoes (and clothes) that I thought I could wear byt can't. I often use Burkenstock Sandles with aa extra padded arch support placed in them (real fashion statement!!)
Thanks for the ideas, both of you. Keep them coming!!
Bev

Just thought of another couple of questions:

--what type of camisole do you wear that doesn't make you warmer and set off more hotflashes and skin pain -cotton or silk? Do you do that in place of a bra? Went shopping this morning to try to find more comfortable clothes and realized I should ask a few more questions. :-)

-Does your skin pain increase in intensity at times or is it constant? I always have to be careful to wear smooth, light, cotton clothes -but sometimes the pain that feels like burning nerve endings is extremely intense, but other times it goes away. Makes me think something must be setting it off -but I can't figure out what this time.

Did you ever have a decrease in skin pain with any of your meds?

Thanks -I'm really find this helpful.
Bev

quote:

Originally posted by Bev:
Just thought of another couple of questions:

--what type of camisole do you wear that doesn't make you warmer and set off more hotflashes and skin pain -cotton or silk? Do you do that in place of a bra? Went shopping this morning to try to find more comfortable clothes and realized I should ask a few more questions. :-)

-Does your skin pain increase in intensity at times or is it constant? I always have to be careful to wear smooth, light, cotton clothes -but sometimes the pain that feels like burning nerve endings is extremely intense, but other times it goes away. Makes me think something must be setting it off -but I can't figure out what this time.

Did you ever have a decrease in skin pain with any of your meds?

Thanks -I'm really find this helpful.
Bev

Hello Again Bev

I had to laugh, I wear Birkinstocks too. I have to wear short little socks with them too. For some reason I cannot go barefoot, but I also have different colored bootie/sock like slippers that have the little non slip dots on teh bottem and I do have a couple pares of house slippers with soles I can wear some times, but not if I've been on my feet during the day.

I have silk & cotten camasoles, the cotten ones have the bra built in and I only use those when I'm going to town, otherwise I'm always in the silky ones under my baggie t=shirts.

My skin sensitivity waxes & waynes, some times it is really bothering me and then other times it's not quite as bad. It never goes away though and is always there. It seems like I can make it worse by wearing a bra or something I already know will cause pain and the longer I leave the clothing on, the worse it gets.

I've never noticed any of my meds helping, but I think one of my meds is for nerve pain and is supposed to help. It's been a few years that I've been on this med and I'm really not very willing to drop back on it to see if it's helping or not. I don't want any of the pain to get worse. (Scardy Cat)

The cream that Myth mentioned is like an otc allergy cream. I forget the regular drug name that is in claritin, but you could probably find it at drugs.com and search for claritin and it will tell you. It's like benedryl and benedryl is Diphenhydramine.

I've actually never talked to either my PC or PM docs about my skin issues, they know that I am barely able to wear clothing, bra's, etc. But we have not really elaborated on the issue. I also have extra pain from wastebands that increases my lumbar pain too, so maybe they think that's all, but I've had so many pain issues over the past several years, that I have just adapted to the skin pain. It's very bothersome, but as long as I pay attention to my clothing, it's like I can semi control it and it's a big deal, but not as big a deal as my spinal pain and the rest of the FM pain & fatigue. I hope that made sense. lol

I'm really glad we are talking about this too, it's a very important issues and one a FMer does not get to discuss with another, as not all Fm patients seem to be bothered by it.

I'm sure family, freinds, etc. Just think I'm too lazy to get dressed and fix myself up.

I also am not able to wear much makeup anymore, cuz my dry eye problems & the skin irritation will cause the make up to drive me buggie and I end up digging at my eyes and rubbing my face from all the irritation.
As far as hair goes, I cannot stand in front of a mirror & fix my hair with blow dryer & curling iron as my spine & arms, shoulders will be in so much pain that I'm not able to hold the dryer or iron, so I cut my hair off really short above the ears and just use some gel and comb it wet.
It's only been a few years, since I would of never in a million years walked out of my house and drove to town with a pair of sweats, no make up and hair slicked back. This illness is very humbling and not only physically painful, but emotionally pain ful too.

Talk to ya soon
Betty

This is too funny , Betty. So much alike!! At this moment I can use a hair dryer, but not for long. In the past, I had to cut my hair off pretty short. What I can't use is hair gel. somewhere along the line i developed a sensitivity to that. I use a special natuaral detergent for my clothes and sheets, with of course no scent.

Okay, laugh with me on this one, it's better than me crying. I'm thinking of going back to teaching in the fall -I'm out of sick days, and my disability insurance doesn't sound like they think I'm a worthy case to pick up. Okay -never mind the pain of the fibro and the TMJ that is worsened when I talk (which is pretty much what teaching is), if this skin pain stays this intense, what the heck am I going to wear???? I was managing by wearing loose cotton clothes -dresses were the easiest on me, haven't worn nylons in years -but the skin pain has become so intense this past week that a silky house dress is my best bet. Thinking it may be time to discuss the skin pain with my doctor???

Someone suggested to me that I may be reacting to what they are using as a flame retardant on clothes, because I can't seem to buy a new pair of cotton pants that don't hurt, no matter how loose they are. I have old pants that I can wear -2 pairs, and they are becoming so thin that they won't last much longer. Have you heard anything about the chemicals used as fire retardants causing trouble with people with skin sensitivities?

Bev
(ps -I'm going to buy a camisol-never thought of that -thanks for the ideas)

Oh My Bev

I don't know what I would wear and cannot imagine what I could wear for as long as 8-10 hours a day.

I don't know about your disability ins, but I do know that if you apply for regular SSDI, it takes atleast a couple of years and sometimes 3 or 4. I'm at the hearing stage (last stage) and am hoping to finally have it done by fall. It's a long drawn out process, so if you have personal disability through your employer or something, then I would look into it further.
I can hardly depend on getting out of bed every day, let alone trying to get ready & drive to work and stay for 8 hours. I can feel the anxiety just thinking about it. It took me a long time to face the fact that I could not work anymore. I tried all different types of employment, short hours, short days/longer hours, different types of work and the last job I had was taking phone orders & counter orders at a pizza place in town for minimum wage. I could not even handle that job for 4 hours an evening for two days in a row. After working on shift on 2.5 hour shift, I could not even get outa bed for 3 days, so it was not really working for me. It seems the harder I push, the longer it takes to recover. Now I just try to keep & pace my actiities so that I can get out once or twice per week for a short time.
If you have to go back, I hope you can find some good ways to help make it tolerable.

I don't know about the flame retardent material. I think I may of once heard it mentioned with a persons allergies, I think it was in children though, but I've never noticed it before and I'm not bothered by detergents, but I know alot of other people who are.

How long do you have before you have to return to work?? I just don't know how some people get through it, but I'm always happy for them if they are able to continue working.

Talk to ya soon
Betty

Hi Betty

My doctor has me off until July, so if I go back to work it would be the last week in August -the start of the new school year. I have tried various things to keep working -part time, different assignment, etc. Teaching provides a lot of good things that help with me cope with my pain level, -self-esteem, feeling productive, social interaction , pride -there is something so awesmone about helping a child struggling to read and see the light bulb come on ... but I think I'm at the end of being able to push so hard. I think I'd like to try part time before I finally call it quits. The pain and the pushing through the tiredness has robbed me of other things in life -and now, at 55, I have to reassess what is important and the physical cost of teaching. I have spent a life time learning how to reach kids with reading difficulties - it's always been a passion -and it's hard to give it up. I had only planned on working 3 more years until retirement -but not sure I can do it. Between the fibro and the TMJ I just seem to have run out of steam. It's been 11 years of pushing -and I don't seem to have much push left. I've been off since the middle of Jan and I'm starting to enjoy being able to pace myself -to know that what doesn't get done today can be done tomrrow -and that if I have a bad night -I can take it easy next day. I am looking at disability insurance through work, but I don't know -pain is so hard to prove. At this point they want more documentation from my doctor.

Meanwhile the skin pain is still driving me beserk. So I'm off to bed with 2 Benadryl . Somebody -it might have been you, Betty, said they couldn't use flannel sheets -so I took mine off yesterday and put on my summer cotton sheets and that made a big difference. Every little hint people can give me helps! Thanks!
Bev

Bev
So sorry that it's taken me a few days to reply. I've really been struggling with sleeping the past several days and it's really wearing me down, & feelings of depression sneak in and I sometimes struggle to get past it.
The weater is such a huge factor in how I feel too, we've went from 75* last saturday & sunday to 33* & a few inches of snow this friday, sat & sunday. All the tree's & shrubs are covered and I'm wondering how the snow is going to effect my already blooming trees & shrubs. I never knew how much the temp & pressure changes could effect a person, till I became ill and it plays such a huge factor on me. Living in the Pacific NW is really wearing on me, it's far too damp, cold & not nearly enough sunshine. Our winter has really ran into spring this year and I am really paying for it.

I can certainly understand your passion for teaching. When my sons were in grade school, they attended a small country school that really depended on alot of parent involvement. I used to volunteer in their classrooms when they were little and one of my jobs was helping some of the kids learn to read. I really loved volunteering, getting to know all their teachers, the kids, etc. It was a very happy time in my life and I still worked part time and was able to attend all their school functions too.
I also understand all your other reasons to hang onto your job, even in a part time status. It's really tough to finally have to come to the conclusion that your just not able to work anymore. It hurts badly and the SSDI process is long, daunting, depressing. I've been shocked at the process and the complete nonsense they drag the ill persons through. I know they have to weed out the cheaters, but I'm going on three years now and It's just been a horrible experience. After my second denial, my husband had me hire an attorney, as the stress of all the paperwork and my lack of understanding the process & frustration was really actually making my illness far worse. So My future hangs up in the air and I'm waiting for my hearing date, which the attorney thinks will be late summer early fall. I just pray it will be over. the dragging out of the mess has really done a number on my self esteem too & self worth, but I will not stop till they approve me.

I'm glad that the sheets changing has helped you. Sometimes I just can't tell what's going to help and what's not. Last night I was so irritated & tossing & turning, I just got up and took a shower to try and get my skin to cool down. I took some benedryl too, cause my med that is supposed to help me sleep, is just not helping me any more.
All I've been doing the past several days is tossing, turning, pulling at my nightgown, skin burning, sweating, hot, then chilled and on & on............ making me crazy. The shower did help some, then I prayed for a while, tried to get comfi and then fianlly dozed off for a couple of hours.

Well, I hope your enjoying your Sunday. I have a Home Ministry lady coming soon to pray with me and bring me holy communion, so I better go and finish my am prayers to prepare for her arrival.

God Bless
Betty

Hi Betty
Thanks for understanding the problem I'm having trying to decide to work or not to work. I also see why fighting for disability insurance would make a person sicker.

I live in Atlantic Canada -and I still have snow in my yard.. Today was nice out, but it's been a long winter and I am so ready for the warm rays of the sun. The sun also seems to help with the depression doesn't it?

I do hope your skin pain settles down tonight and you are aboe to sleep better.

Thanks for your support.

May God grant you a eaceful deep refresing sleep tonight. :-)
Bev

Hello Bev

How have you been?

I finally got a good nights sleep last night and am feeling much better today. I've been struggling along in a pain & fatigue filled days of zombiesm. Lack of sleep and additional pain really makes every day of suffering a very long one. If it were not for my faith, I' don't think I would make it through all this. Part of my sleep issues are due to my husbands horrible night shifts, they roll into part of the day and going in early at night, so I'm stuck here for 12-17 hours all by my self and for some reason? I cannot figure out why I can't sleep. But I'm very thankful for last nights long sleep, as hubby was off and went to bed early with me and snuck out early this am to go for his training run, I slept for 14 hours strait and it was really needed.

I do believe that the skin pain & irritation makes me feel like I'm allergic to my own skin and not comfortable in it anymore. I just want to remove it and climb out to get into some new skin that does not hurt and I can be comfortable. It's just weird.

Atlantic Canada, is that above Ny or around there. I guess I'd not heard that explaination before. My husband & I both love Canada so much. We've vacationed in several providences and I hope some day we can get clear over to your area. We just finished our last few snow storms a couple of days ago. I used to love the snow, but it's really not condusive to my life any more and causes a great deal of extra pain. I'm thankful that we keep a fire going, as I would really be in bad shape without the dry wood heat.

I hope your doing well and can visit as often as your able.
Take Care and keep hoping on the summer warm days.
Gentle Hugs
Betty