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can't do it any longer
3 Replies
cowboy - April 11

I don't want to spread negativity, but I don't know where else to express myself. I've had fibro for nine years, been to tens of doctors, flown all over the world for help (New York, Philly, Germany), spent tens of thousands of dollars, and gotten virtually no place. I don't want to dishearten anyone out there who is new to this. Everybody is different, and I have found that Lyrica helps some, so I recommend not giving up hope. But I can't seem to take my own advice as I've reached a point of such desperation. My fibro recently took on a new dimension: Multiple Chemical Sensitivity. I've been sensitive smells since the beginning, but now they cause agonizing burning. After nine years of this, I thought I had experienced it all, but this is a new one on me, and it is just too much. I can't leave the house because every person wearing perfume, hairspray, scented deodorant, etc. is a menace. This last straw has led to total isolation. MCS seems even more scorned by the medical community than fibro itself, and I'm tired of fighting. I know I need counseling, but I can't physically get to appointments, and no online counselor accepts insurance. I don't want to be a negative voice to others who I know are equally hurting, but I don't know who else to talk to.

 

January - April 11

Hi cowboy, so sorry you are having such a bad time and feeling so frustrated. I have one fibro friend who has MCS also. I can only imagine how bad you feel.

If you have the energy, please report the doctors' lack of responsiveness to your insurance company and the medical boards. If they are getting paid for doing nothing, that is wrong. You can rate them online at a site like Rate MD. You're not being negative - you're just telling it like it is. A lot of new diseases are labelled "all in your head," and I think Lyme Disease is the perfect example. But a group of people organized and fought for research and treatment. Now there are micro-organisms associated with it. We all have to make noise if we want to get better research and treatment for fibro and its related conditions. I believe MCS is one of them.

Hopefully, you can educate yourself enough to present "evidence" to your doctors - there IS new information out there that they probably don't know about. It's hard to keep running to doctors when you are sick but you have to keep trying - only be more selective.

Try googling "multiple chemical sensitivity" - you will get a large number of links to doctors and resources. MCS may even be considered a disability - the first article that comes up is by a lawyer who has MCS himself. There is a LOT of information. As with most of us, you will have to FIGHT for yourself! Perhaps you can print out some information, and take it with you to "educate" your doctors - and if necessary, your insurance company.

I just read somewhere that MCS may be a problem with the immune system or with enzymes in the body. It can manifest as an allergic reaction. Surely there are ways to treat this!

Hopefully, you can find some help and support. There are organizations. We can't post websites here, but put in the w's and type multiplechemicalsensitivity [dot] org. Also try w's with chemicalsensitivity [dot] org.

Maybe others on this forum have MCS too and can help you. If you learn anything, please let us know. Feel better.

Just an odd question that occurred to me… did the extreme sensitivity begin after you started taking Lyrica?

 

cowboy - April 12

Thank you for your encouragement. It is nice to have some validation for a change.

I am looking into treatments for the MCS, and I would love to hear from anyone else out there with similar problems. I want to see a doctor about it, but I don't want to get taken again. Most of the doctor's appointments and the treatments I've read about (such as something called EPD and sauna and nutritional therapies) are not paid for by insurance.

I think the serious MCS started about two years after I started Lyrica after an exposure to a strong chemical. I had sensitivities all along with the fibro though. I don't really feel the Lyrica and the MCS are related, but I guess you never know.

Thank you again for your help. It means a lot.

 

Pikespeak - April 20

I can certainly agonize with you on smells. My husband is NOT ALLOWED to use public restroom soap, as it drives me up the wall! Even after 18 years he still doesn't "get it!" I have to do the "sniff test" before purchasing lotions, etc. Even on occasion I will get one home, only to find it offensive. I love Easter Lillies in the store but can't stand them in my home. Never thought of it being related to FMS...

 

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