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looneymom

Sudden Severe Sensitivity To Sheets And Blankets

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My son has been on antibiotics and ear drops for the last 17 days. About a week ago, he complained his compression socks made him hurt more and it was a struggle to get them on. He said it was painful to put them. His legs and feet were not swollen and there was no blood pooling either.

Sunday and Monday night he finally started sleeping through the night. However, last night he was not able to sleep through the night and cannot stand to have a sheet or blanket touch him. When he tried using a light weight blanket this morning, it made his tremors and shaking worse in his legs and feet. Could being on antibiotics this long increased sensitivity like this? Has anyone had a similar situation to this?

I have already contacted our doctors to let them know what has happened and yesterday was Tyler's last day on the antibiotics. No more antibiotics for right now. Hopefully this will go away in a few days. Tyler has never had a reaction like this before and he does have a rash on his face around the noise area. I took a picture so I would have documentation to show doctors. Anyone had an experience similar to this?

Rachel

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You could look up stevens-johnsons syndrome and see if his symptoms are similar. I had a very mild case of this from use of corticosteroids. The good news is if it is drug induced, it will go away once the drugs are stopped. I obviously don't know if this is what Tyler has but I had never heard of it until I had it. The docs didn't call it this until I asked if that's what was happening.

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I have major issues with sensitivity to my clothing and such all the time, and am not on any special meds other than my pots meds. We asked the doctor about it one time, and he basically just brushed me off. There are times that my clothes just feel super constricting to me, and it's all I have in me to just keep my clothes on, and it's the same with bedding. This is why sometimes I sleep naked even, because I cannot tolerate my pjs on me, but the sheets some how soothe my skin and nerves. I haven't been wearing my compression stockings lately either, because it seems they just hit me at the right point of insanity, lol. Just can't take it, and I claw my legs once I manage to get them off.

It's a pain to live with. Hope you figure out an answer soon.

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Hi Katybug- This makes sense to me. This is the first time Tyler has reacted like this after a medication. I'll watch him closely the next few days and hopefully it will go away.

Hi Becia, Sorry you are struggling with this issue also. My son has always been sensitive to touch when his POTS started but never to the point (until today) that he can't stand having a shirt or compression socks on. Tyler has been to an immunologist and his immune system is not functioning correctly. Have you had anymore testing lately? Have you been seen by an immunologist? Since you mention the sensitivity issue, I wondered if your POTS could be immune related?

Rachel

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I haven't had any immune testing yet. My doctors are really not managing my pots well, and I'm struggling a lot with different things, and they are just now coming to the realization that there's more going on that we need to manage. I'm having seizures now because of the meds now, and we are just now working on getting those under control. Just a bunch of crazy.

All I know is right now is the most comfortable I've been all day... I'm wearing a really super soft, super big shirt and a pair of really big shorts because I can't handle the feel of the elastic on me, curled under my sheets. And I feel wretched, been fighting a migraine all day, which makes me more sensitive, and whiny, lol.

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Hang in there Becia. I know this has to be so hard for you. It sounds like your doctors are thinking about underlying causes. You really do need doctors like that. Plain old simple POTS can be taken care of with medications if an underlying medical condition is not the cause. It's hard to get aggressive with doctors until the same thing keeps happening over and over again. With Tyler getting sick every 3-4 months last year and this year, our cardiologist has really taken notice and so has our family doctor. I'm sure you feel like answers can't come quick enough and that you are tired of not being able to get on with life. I understand that feeling also. Take it easy and rest. Hopefully tomorrow will be a better day for you.

Rachel

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Rachel,

I dont know where Tyler's pain is exactly but I have had a problem with pain in my legs and knees when I wear compression hose, regular panty hose, and even blue jeans. I cannot wear anything on my legs that puts even the slightest pressure or it causes lots of pain. This is why I have never been able to use compression hose to help and the docs tried many types and many times with me. The docs kind of always gave me a weird look about it and had no explanation for it. My legs also dont swell or turn discolored when it happens. It is just severe pain. So I avoid those things.

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Has anybody mentioned allodynia, where normal touch can feel like pain? I've got this. Tight hugs, or even soft massage hurts like heck !! and brings on fluish symptoms later...course I've also fibromyalgia but allodynia can be more common and many drs are ignorant

http://chronicfatigue.about.com/od/glossary/g/allodynia.htm

I have never been able to use heavy winter comforters in cold weather. Hurt my toes/feet. I dog sit for some friends and last time I was there I woke up 2 mornings at 5AM feeling like shoulders were sore. The sheets were new, and 100% cotton but heavy, scratchy and noisy! I finally yanked them off after the 3rd AM and put softer ones on and slept much better.

It is a shame more doctors are not aware of this condition because they should be. I've had this junk for years so guess I am shocked when doctors don't make patients aware but we are not really surprised, are we? :-/

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I didn't mention allodynia because I think looneymom and I have talked about that before regarding her son and myself. It just sounded like what she was describing this time was much more acute if I'm interpretting correctly. But, you're right, the severity of my allodynia certainly varies with how bad some of my other symptoms are.

I hope Tyler feels better (relatively speaking) soon!

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I had never heard of allodynia, thanks Sophia3. I read the link and cant believe docs always give me a weird look about this when there is an actual cause. They are ignorant, you're right.

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Allodynia is horrible and Tyler's has gotten much worse in the scalp if this would be the correct diagnosis for him. However, since we have started exploring the PANDAS and immune system issues, our cardiologist thinks this is something more immune related.

I was able to get ahold of Tyler's doctor yesterday and he does seem to think this hypersensitivity type of reaction is from coming off the medication (ear drops). Hopefully in a few days, things will get better.

I am beginning to research the concept of healing the gut. Tyler has been taking a probiotic since August and I started adding digestive enzymes last week with his meals. Gradually I am going to switch Tyler over to a gluten free diet. Tyler's body does not handle change very well so we will see how this goes. Rachel

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Thanks Katybug. The multi- enzyme formula that I got from GNC has it and a few others. Tyler's pain levels are still up but he can at least have a blanket on without making the tremors and shaking worse.

Rachel

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Becia, you might want to look up "sensory integration" or "sensory processing disorder". I have had sensory processing issues my whole life. It affected me severely as a kid! I have found many ways to deal with it. It takes time, but you can get it under control. I have a endless number of tips for dealing with particular situations.

For constricting clothing, I have taught myself relaxation technique to breath threw it and relax. Most of the time for me it is the built up tension, stress, and panic feeling that make it hard to handle. Noises can be handled with ear plugs, but we cant always get naked, so for me releasing the built up tension and stress is the only way to deal with it.

A few things that come to mind that help... seamless socks, seamless underwear, toeless compression socks, compression vest, soft fleece blankets, weighted blanket, heated blanket, earplugs, headphones, stress balls, silly putty, massage, aromatherapy scents, lavender and calming lotions, gum or something to chew on, rocking chair, yoga, meditation, relaxation, bubble bath, theraputic body brushing (using surgical brush)... basically stuff that is seamless, soft, comforting and relaxing.

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I've got incredibly sensitive skin. Have had for about 10 years and it was this one symptom that was the starting point to my pots becoming ongoing rather than periodic. When I stick to a very strict diet -- an elimination diet but one that includes dairy because I can tolerate that -- and when I don't have to try new meds (as they can often cause this skin sensitivity problem) I usually do okay and am able to wear more 'normal' clothing - still soft but not my old worn stuff that is like the oldest flannel to touch. I sleep on high thread count but very old sheets as they are so soft.

I was doing fine but yesterday I had a dental appointment. I've become reactive to the lidnocaine and had worked out a 'strategy' with my allergist to try help me with the skin problems when facing dental work. I took 25mgs cortisone the day before treatment, 50 mgs yesterday, the day of treatment, and 25mgs today and still have had a burning hot red skin reaction to the injection (no adrenalin in the shot). I'm sitting in front of a fan now, am having frequent cool showers (but not cold ones as this can make it feel better at first as it lowers the core body temp. but then rebounds and am hotter than ever for a while) and just having to suck it up.

I have another appointment next Tuesday for an hour and half in the dentist chair but am going to put it back a week as my reaction has been so severe this time that I will need more time to recover.

BTW, the cortisone makes me feel like ****. Waking in the night, feeling agitated and anxious.

I've tried all the meds for mast cell overaction but none have worked -- two caused severe migraine breakthrough and one caused the problems they were supposed to solve.

I find anti-histamines no longer help with my skin, unfortunately.

blue

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I have terrible sensitivity to any pressure, metal, or textiles on my skin. I get diarrhea just from wearing loose shorts around my waist. I get a migraine if I put on a bra within minutes (sinus tachycardia?). I am naked at home, unless I have to cover up.

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Hi Naomi, i spend my days at home in a soft t shirt and underwear that sits well below my waist. I don't get diarrhea. I have the opposite problem. Anything around my waist now causes abdominal pain to get worse. Sorry to hear you get a migraine when you put on a bra. I have really never worn a bra - I'm now 58 and could really do with one, but the pressure around my midriff is even more intolerable.

Blue

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