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|Posted By : Kythe - 7/21/2008 7:40 PM|
|So I saw a rheumatologist for the first time last Friday. He agreed with me and said that he thought I have fibromyalgia. He said though that he still had to rule up lupus so he ordered blood work for that just to make sure, but he said he expects it to come back negative. I suppose it's good to check since one can have fibro and lupus at the same time.|
In addition to the pain and fatigue, I also have a lot of environmental sensitivities(light, sound, odors, chemicals, temperature). I asked the doctor if there was any medicine he could give me to reduce my sensitivity to environmental factors and he told me there was no treatment for this. I was so disappointed because being so sensitive to my environment, especially my heat intolerance, is often more distressing for me than the pain and fatigue. It's a real problem and it interferes with my sleep. I've gotten a sleeping mask and ear plugs to help block out the light and sound and I put the thermostat lower at night. Somehow this still isn't enough. Sometimes I still wake up in the middle of the night feeling way too hot and I have to rub myself down with an ice pack before I can get back to sleep. The ear plugs help somewhat but they don't block out everything so sometimes noise still wakes me up. As for the sleeping mask, it blocks out light very well, but a lot of the time I'm still waking up too early because even if I can't see the light, somehow my body still senses it. Sorry for the ramble there. Anyway I was just wondering, even though the doctor said there was no treatment for environmental sensitivities, I wanted to know if any of you know of treatment for this. Possibly a home remedy or something herbal?
Another thing I was wondering about is that a long time ago I was diagnosed with PCOS, which is another disorder that tends to cause a lot of fatigue, does anyone know if there is a connection between fibro and PCOS?
|Posted By : Chutz - 7/21/2008 8:58 PM|
|Glad to hear you had a good talk with your rheumy and it sounds as if he's answering your questions and being thorough. From what I've read there's no proof of a relationship between fibro and PCOS. But there is so little known about fibro so far that a firm answer is hard to come by.|
Getting good sleep is near impossible for those of us with fibro so don't feel alone. We live out in the woods where the air is clean and fresh, it's dark and night and quiet. You would think I'd sleep like a baby...not! I wake up on an average of 4-5 times a night so deep sleep is a rarity for me. Do whatever it takes to get some deep REM sleep...that's the kind we need but are lacking. That sounds like a great topic for our daily Check-In. Come join us each day...we have a great time!
Co-Mod Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)
|Posted By : getting by - 7/21/2008 9:29 PM|
|As far as I know there are no remedys for the sensitivities. That is something that we have to learn to live with. I am sensitive to things too. Also have allergies and sensitive skin. NOt to mention the sounds, sights and smells. We just have to try to avoid the things that bother us.|
Best wishes, I hope that you get some sleep.
Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies
|Posted By : Kythe - 7/21/2008 9:34 PM|
|Well I'm not sure if REM sleep is a problem for me. I believe REM is the stage of sleep that dreams occur in. I know that I dream most nights even if I can't always remember my dreams clearly.|
All I know is that I'm really looking forward to the winter because I'm so sensitive to the heat. I also slept a lot more soundly in the winter and I'm not sure why. Haven't been sleeping well since the beginning of spring and I remember the same thing happening last year but thought it was a med side effect at the time. I'm just hoping that when winter finally comes I'll be able to get the kind of sleep I used to be able to get.
|Posted By : Lindaloo - 7/22/2008 6:07 AM|
|Aw Kythe, I am so sorry to hear of your sensitivities and difficulties sleeping. I agree that avoidance is the best answer to all of them. Easy to say, right? I will pray for you.|
I want to welcome you to the forum. I am so glad you found us and that you are posting. It is a great place and you are most welcomed.
Moderator Chronic Pain
Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help. I will be there.
|Posted By : GamJill - 7/22/2008 9:44 AM|
I think the sensitivities affect alot of us. I get skin rashes easily so have to use "All" free and clear for my laundry. All my lotions have to be unscented and my soaps have to be mild. When I clean I can't stand the smell of the chemicals but it has to get done and I also open the windows to get the smell out faster.
Avoidance like Karen said is the best and I think you will figure out what works best for you. Good ole trial and error- GamJill
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
Zoloft, Tylenol 4000 mg., Zanaflex
|Posted By : Meggie - 7/22/2008 10:11 AM|
I loved your question and was disappointed that there is no help because I also suffer from sensitivities to everything. It is very difficult some days. I find that I need to have cotton stuffed in my ears a lot. The daily sound of dishes hitting against each other can be too much for me. The part that is really hard is when I need to tell my children that I need them to lower their voices or just not to touch me because I can not handle it. The girls did not sign up for this (neither did I; who signed me up ) and I feel bad that they are affected by it. I have even told my poor husband that he smelled and needed to shower (not a good thing to say to a man). Perfumes and deoderants need to be scent free.
So my answer has been to, plug the ears to soften the noise. I am very careful with perfumes and use scent free soaps and lotions. Touch - well I hide in my bedroom when it gets really bad. Light - I wear these polar sunglasses that wrap around to block out light ( my girls say I look like a dork but I don't care, it's be a dork or a crab, they choose dork). I only wear them outdoors and when I am driving. I also have the lights in my office dimmed or taken out; at home the shades are usually shut. Somedays I live like a hermit.
I hope you find some relief and know that I will be praying for a solution for us!
|Posted By : Kythe - 7/22/2008 10:50 AM|
|Yeah I'm really sensitive to certain products as well. Sometimes I can handle them scented and sometimes I can't. Deodorant is one that I really can't handle scented and it is so hard to find things that are truly unscented. Most things that are marked unscented actually have fragrance in the ingredient list. I was really upset yesterday when I had to buy more deodorant and the store didn't have the stuff I bought last time. I'm always nervous about trying new brands and they only had one option that was truly unscented and I'm worried that when I try it, it's not going to work as well as the last brand I used. The thing that really blew my mind was that some deodorant that was marked as being hypoallergenic actually had fragrance in the ingredient list. That's just ridiculous! I really think it should be against the law to mark something as being unscented if there's fragrance in the ingredients list.|
I also find there are a lot of natural scents that I can't handle. For example, the smell of oranges makes sick to my stomach and many flower scents give me a horrible headache.
|Posted By : Gamma - 7/22/2008 11:41 AM|
Have you tried running a fan at night to help block out unwanted noise and keep you cool? I have always done this to help block the ringing in my ears due to tinnitus. As far a deodorant goes, I finally found one that works for me, and I think I've tried every one on the shelf. I buy Dove sensitive unscented. It truly does not have a scent and works great.
Fibro, Osteoporosis, OA, RA, DDD, IBS, Vertigo, Tinnitus, Carpel Tunnel, Epilepsy, TMJ, Hypothyroidism, Familial Tremors, Spasms, Neuropathy, Trigeminal neuralgia, heel spurs
|Posted By : Kythe - 7/22/2008 3:36 PM|
|The noise from the fan is too loud for me to sleep with, I only use it during the day. Even when I use it during the day it doesn't help all the time. Air blowing on you doesn't do much good if the air that's being blown is hot and humid. I often have to resort to lowering the theromostat. Makes me feel a bit guilty because other people in the house get cold.|
I did look at the Dove stuff, but i could only find the Dove unscented in the hard solid kind which feels really irritating on my skin. I need to use either soft solid or gel. The brand I was using before was Secret Platinum soft solid unscented which had no fragrance in the ingredients. What I ended up buying this time was a brand called Mitchum fragrence free and it came in a clear gel. I just hope it works as well keeping me dry as the Secret Platinum did.
|Posted By : tyno3 - 7/23/2008 6:29 AM|
|Sooooo,cooool. Kythe, Sorry, I'm not poking fun, it's just that we had a three week spell of really hot weather, like 30C most days, and lo and behold, day before yesterday Carlalita (spelling prob not right) a left over hurricane brought cooler, quite a bit cooler (14C) air and rain over our region. Sooo, the sleeping, light, sound, touch, smell sensitivities. I noticed around 94 when I was about to get dx. Fibro, that any soap, perfume, deodorant, body cream, moisturizer etc made my skin break out in big welts, and sound and light often would drive me to retreat to my bed with a big soft pillow wrapped around my head. I went and got a sound machine at the drugstore. I choose ocean waves rolling in to shore. There was also sounds of birds, wind etc. available but the ocean sounds did it for me. Then I would roll up a towel and stuff it under my bedroom door. Any hubby or boufriend or youngster wanting to share my bed got banished to an adjacent room once serious sleep time, arrived. No pets in room. This was hardest b/c They'd look so forlorn (kinda like hubby) but when Mamma's unhappy, everybody's unhappy and I think they knew this. Not long after came a triple dx of Hypothyroid, Fibro, and Anemia. In fact doc said (on phone) "are you standing up? Cause if you are I dont know how you are." Id been holding down 1 fulltime, 2 pt jobs. Shortly thereafter, Migraines started. This hypersensitivity is also associated w. Migraine which is often assoc. with hypothyroid, IBS, Rosacea, endometriosis, and a whole host of autoimmune problems. Blackout curtains help too. There are some really good products available now. The creams I use, especially on my face are not usually in the cosmetics aisle, but down where they keep therapeutic creams, I won't name specific products but they cost about 1/3 of the cosmetic cream stuff and absorb instantly, never oily or greasy. I think the sleep stage we seek is a deeper level sleep like Theta or Delta, which can usually be achieved by using tri-cyclics like amyltriptiline at bedtime. Actually, in order for it to work well it should be taken 2-3 hours before bedtime.
|Posted By : tyno3 - 7/23/2008 6:31 AM|
|Sorry, Kythe. I want to welcome you to this forum, it and an Alzheimers (I'm a caregiver), forum, have, and I really mean this . They have saved my life. Thank-you all.|