Old-timer needs some info and advice. Hurting!
As some of you know, for the last few months I have been getting acupuncture. This has been very tiring but it was causing some muscles to reawaken. I rediscovered my back and stomach muscles and, while not perfect, my right hand has stopped deteriorating and is rehabilitating.
Two weeks ago I did a 6-pill pulse. It took almost 2 weeks to recover from that. This past Thursday I did acupuncture paired with 1 tindamax and am not too bad off at all after 2 days, except . . .
I needed to buy a new mattress. I read about all the chemicals being used in mattresses now and that it takes several months to outgas. So I decided to get an organic latex mattress and found what seemed to be a good one online. It was delivered Wed.
Wednesday night I woke up after a few hours of sleeping on my back with my heels and hips burning. My skin was cool. I thought I might be having an allergic reaction and took a Benadryl. Thursday night the pain was worse and I not only took Benadryl, but slept on top of the blanket. Last night I woke up after a few hours of lying on my side feeling like my left hip and thigh were on fire. I moved to another bed where I slept well as long as I stayed off my left side.
My left side, heels, and the back of my thighs still burn as though I were badly sunburnt. It’s not nearly as bad as last night but it is obvious to me that I can’t sleep on that mattress. ($$$!!)
Something tells me that the burning is peripheral neuropathy.
I did not experience it before the new mattress but now, apparently, I’ve got it. So am I pushing myself too much with the pills and the acupuncture? Or is it just the mattress? What kind of mattress does one sleep on if one has peripheral neuropathy?
I feel like, despite all my efforts, I’m losing ground and I don’t know what to do. I keep expecting to get better and to be able to walk better but, while I can better signal my muscles, my life is getting smaller and smaller. I use a walker outdoors because I can’t climb curbs as I did in the fall. But yes, my hand is better. It’s confusing and disheartening.
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New Mattress
I'm sorry to hear about your reaction to the mattress. It does sound like a reaction to the latex. I was looking to replace our very old Tempurpedic foam mattress and did some research. It seems that Ikea has a good non toxic mattress. This is probably what I will get.
Hang in there. You are sensitive and the exposure to the latex is probably setting off inflammationi. Anything you can do to detox will help.
Raven
Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath
mattress
Arttile,
Hello! Here is what I found:
Original Mattress Factory , Cleve. OH recommends a mattress encasement sold by large retailers including Bed, Bath, and Beyond. OMF does not make "special" mattress for allergy problems. Consumer Reports recommends the OMF product; OMF is local, which is why I asked. them.
Betsy
Thanks MSMom. Do you use
Thanks MSMom. Do you use their mattresses? They say nothing about outgassing.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
mattresses and outgassing
Hi, again,
Arttile, I have purchased 2 Original Mattress Factory mattresses, but allergies and other sensitivities have not been a problem. Here is a phone number for Customer Service at the factory:216 661 8388. In the showroom there is a dissected mattress so customers can see and touch what they are buying. Customer questions are encouraged. I think you may want to directly ask about "outgassing." Hopefully, the representative will not be evasive. The one I spoke to was knowlegable and "low key." He was not trying to sell mattresses no matter what. Good Luck!
Betsy
Hello Nancy,it's strange but
Hello Nancy,
it's strange but I am experiencing with my walking the same as you do. While my walking is still improving but only in quality when I am outside I can't do a step without trecking holes though I don't lean agaisnt them just I feel safer. My walking has improved so much that my right toes don't go inwards/to the left but they are straight and even a little outwards /to the right. I noticed it a few days ago and I was much surpriced as my legs are still burning much. So I still think the burning is the sighn of the recovering. I experienced the burning at the very beginning of my MSi / when an attack finished with burning no symptoms remained, when there was no burning the symptoms remained forever. But then the MS was for short time and the burning was during 2-3 days and then stopped. Now as there are plenty of layers of damaging there must be much burning and for long till all the bad layers burn out. I wouldn't send the mattress back - it seems that you can't, but I wouldn't be stressed about burning. I would do the same what you do - I would change the place at night if the burning is intollarable and you can't sleep but I would try to sleep there at least for a few hours and watch how my walking is or any movement. You might be surpriced you will be improving. Really after so many years of MS and SPMSi the recovering is surprising and also the way of recovering is so.
MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi
Evita, while I do get some
Evita, while I do get some neurological effects when pulsing, this happened between pulses and corresponded directly to sleeping on this mattress.
As for my walking, it has deteriorated greatly since starting capi. So far, I think that CAP is slowing things down but not really winning the battle for me.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Nancy do you know why I think
Nancy do you know why I think that burning while sleeping on the new mattress could be the regeneration? When you sleep on the new mattress your body and backbone are supported in the proper way, the nerves and blood stream aren't blocked and everything that is needed for regeneration is delivered to the places. In addition warming up the body part that you lie on supports the regeneration - warm parts where the blood stream is high can better regenerate. That's why I think that night burning can be the sign of regeneration. And while sleeping everything is regenerated better. While sleeping on the old mattress there are some nerves and some blood stream blocked as the body doesn't lie in the proper way and isn't relaxed. And you are used to the blocked places while sleeping so nothing is done there.
MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi
Evita, I think there is some
Evita, I think there is some validity to your thesis, but I definitely do not sleep better on the new mattress. I am back on my old mattress now and, if I've exercised, I do get some burning. But it is not as acute. Also, after 6 days on this very expensive new mattress I can see the indentation of my husband's body. And the sides are so soft that you can't sit on the bed which, aside from being inconvenient, will negate its use if I ever need a wheelchair because I won't be able to transfer.
My doctor agrees with me that it is probably exacerbating my condition although not the only cause for it. It's got to go back.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Nancy, it really seems your
Nancy, it really seems your mattress to be too soft. A good mattress which support the backbone correctly has to copy the body when lying and then it can't leave any indentation of the body. You should ask for the mattress certificate when looking for a new one. This certificate has to state the health harmless, it should release no harmful gasses, it should state how it supports the backbone. E.g. in Europe a good mattress is delivered packed in a cylinder and after unpacking you can't use it for 24hrs or more till it gets the shape of mattress and the proper softness-hardness. When you lie on it it frees air so it copies the body and then the air is taken back into it during the day. Also you should ask for the time guarancee. The longest is the time the better the mattress is.
MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi
Nancy, RETURN THE MATTRESS.
Nancy, RETURN THE MATTRESS. You're having some sort of chemical reaction, so why suffer? I know most of us don't think about mattresses that way, but obviously this product has caused your reaction. Manufacturers don't like bad press, so it shouldn't be an issue for them to take it back.
Of course, the next problem is where to get another mattress.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
peripheral neuropathy
Hi, Arttile!
I hesitate to give a comment because I am less than a full year on this site. And I do not have Cpni. However, i DO have neuropathy which is spreading on the hip, thigh, and feet of the side I sleep on. I think it has to do with all the weight on that side every night for 8-10 hours. AND my age; I'm 73+. I roll flat on my back to relieve the pain , doze there awhile,and roll to my side again to fall asleep in a real sleep; not a half awake doze. I find I sleep best in a recliner, tipped as far back as it will go; not flat in a bed and I sleep on and under cotton everything.
Gotta confess, the Siamese and the Yorkie Poo sleep there too. I purchased a HUGE , expensive, well padded, well constructed 350 pound man's chair., expecting it to live longer than I. ( the chair, not a 350 pound man(!))
Are you allergic to Latex gloves? That might give you an answer to the question about latex mattress allergy. My skin does not tolerate any covering which does not "breathe." Waterbeds, foam mattresses, nylon anything, rain coats, underwear, shoes, etc.I cannot even wear makeup. Just keep testing and trying out alternatives; you'll find your body's answer.
Please keep us posted.
MSmom Betsy
2400 mg NACi, 600 mg Coq10, 600 mg Alpha Lipoic acidi, 2000 IU sublingual B12, 5000IU D3
MSMom, where did you find a
MSMom, where did you find a good all-cotton mattress that doesn't outgas? I need king-size.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
mattress
Arttile,
I sleep in a chair! BUT, I am contacting a local mattress manufacturer to see if he makes a mattress which will suit your allergic needs. ...and how much it would cost . You might check out small (er) manufacturers near you. A "green" mattress movement??
Betsy
Thanks Mac and MSi. I will
Thanks Mac and MSi. I will return the mattress but they won't take it back for 2 weeks if it's latex (they want you to get used to it) and they charge hundreds of dollars for shipping and restocking. I guess I'm resigned to losing $500. and then I still don't have a mattress.
I used to wear latex gloves to work (until about 5 years ago) and 30 years ago I slept on a latex mattress for about a decade. I guess the m.s. may have changed my sensitivity. I wear hypallergenic makeup but not anywhere near my eyes.
It is so hard to find a mattress that is appropriate and not just online!
Nancy
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Nancy, there are all sorts of
Nancy, there are all sorts of strange things put in mattresses or soft furnishings these days, from cheap stuff from China that was actually killing people a few years ago in the UK, to top of the range, NASA inventions. I guess it’s not the latex that is causing the problem, because I remember that when you had that fall in your kitchen, you were wearing rubber soled slippers. (How’s that for memory?) Now, organic latex things ought not to be covered with anything that disagrees with you, but who knows? I presume you have pure cotton or linen bed linen to separate you from the mattress, being prone to allergies, so it is either some addition to the latex or maybe, being optimistic, it is nothing to do with the mattress but more to do with you sudden improvements: the longest pulse ever? I rather hope the latter......................... Sarah
A Journey through Light and Shadow
I asked my capi doctor about
I asked my capi doctor about this and she is sure that it is a latex allergy. That is a common allergy. She is positive and says to send the mattress back. She also says to lay off the tindimax for a while because I have gotten so weak.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Well, if it is a latex
Well, if it is a latex allergy it makes sending the mattress back easier, but the problem as to what to buy remains. I agree with your doctor about going easy on the tindamax, though. I know it’s amazing that you managed to take so many in one pulse, after all this time, but the long vacation should be the time to try things like that, or maybe because you are so sensitive to stuff, always go easy on everything....................... Sarah
A Journey through Light and Shadow
MY HORROR STORY WITH MATTRESSES
I didnt know about fmsi, cfsi, mcs and very little about chemicals. Doc after doc after doc and then head of the Australian Medical Association (nobody could have this much pain for no reason) who gave me a referral to a shrink. My 20 yr story is coming to an end. My liver is malfunctioning making small toxins into carciogenics and stage 2 is too slow to pick them up and carry them out of the body. My virus panel is very long including cpni but I am too fearful of using the protocolsi suggested because of my liver problems and of making a yeast infection worse. I had no idea mattresses were full of chemicals. I had no idea I reacted so bad to chemicals. I wasnt even aware of all the food allergies I had. I went through 12 mattresses. As mad as people thought I was I could not sleep on them due to the nerve pain and waking up with anaphalactic reactions. If I could return them I did. Many would not let me. I had to sell them for 1/3 of the price and stupidly buy another new one for the same thing to happen again. I finally settled on a 2nd hand one made with mostly wool not knowing that being 2nd hand a lot of outgassing would have occured. Wool doesn't have as many chemicals and can be less allergenic than other materials. I would try to stay away from new.