I am doing a Cymbalta study right now. Since it's a double-blind study, I don't know if I'm getting the 30 mg doses each day or a placebo. I haven't noticed any difference in pain or pain tolerance while doing this study so far.
You're not crazy if you can't deal with "everyday" environmental chemicals. Most of these chemicals are actually neurotoxins, including the perfumes and fragrances that so many wear and that some people seem to bathe in. Cigarettes do a lot of bad things to me, even when Smokey is finished fouling up the air with his poison stick. I have thrown up because of smelling Smokey getting on the bus and having just finished smoking his poison stick.
A friend of mine, who is significantly older than I am, noticed years ago when she herself was only a kid that she couldn't be around the smell of Pine Sol without getting very sick and it affecting her mood and mental abilities. This was well before anyone ever admitted that any of these cleaning chemicals could possibly be responsible for making anyone sick. Pine Sol does all that and more to me. It's horrific stuff.
I now use a filtration mask when I leave my apartment, because it makes "everyday" chemicals easier to deal with. Some people assume this means they don't have to be careful with their perfumes and fragrances around me. No, it doesn't. It just makes the "normal" amount of stuff easier to cope with.
Even if the tests keep saying my thyroid is okay, it is recommended to use low thyroid medication? Seriously? I'm to go to an early morning appointment to check the adrenals. I doubt it will show anything. Funny thing is that even if the tests show nothing, I know that doesn't mean that something isn't off. Otherwise I wouldn't have Hirsutism as much as I do. I will keep this in mind next time I see my PCP and see what she has to say about this.
That's all for now. Heavy brain fog is settling in.
I must have this. I have exactly what you describe. I drive my family crazy. It so affects my mood. Other than avoiding all of these things which is not always possible but I try what do you do? I was at my doctors appointment the other day and had to leave. Someone came in who had been smoking. I got so irritable, an onset of a migraine and FM symptoms. It was awful. Perfumes, cleaning chemicals and even the air can do the same thing to me. I got in my car the other day, it had been in the garage. I told my husband there must have been a chemical in the garage that my car some how took on the smell. He really does think I'm crazy at times. I met a woman years ago and I remember her telling me her daughter had to quit an amazing job because she had this. I thought how crazy, to not be able to be in an every day environment.
Any way I am so happy to hear you do take a lot of natural remedies in addition to your medications. I meet so many people with FM, a friend of mine in fact that does not see the need to address foods, or herbs, or vitamins when it comes to her FM. I've learned the hard way after years of trying to do it my way, eat whatever, drink wine when I wanted. I'd get severe migraines, stomach problems, mood issues. I met a doctor years ago that had me read two books: "Life without Bread" and "Solved, The Riddle of Illness." I'd have to say they changed my life.
Back to your original question: how are you doing? Did I mention I take Cymbalta mainly for FM. It is an anti-depressant but it really helps fibromyalgia pain. The same doctor who recommended the two books put me on a low dose thyroid medication years ago. Even though my thyroid test checked out okay he asked about symptoms and I had all of them for under active thyroid. His research and theory was based on taking a low thyroid medication would help cure FM. I have not been cured but I know when I am off of the thyroid medication my pain is unbearable. So if you can't tolerate the narcotics perhaps trying something like Cymbalta and a low dose thyroid medication can help. Of course doctors don't just prescribe what you want them to so do some research and go prepared to your appointment. Discuss this with them if you believe this might help you. I can tell you it's something that has helped me so much. This doctor has since retired but I will never forget him for this information. Take care.
I get a wide range of reactions when chemicals affect me adversely. Breathing troubles, runny and/or stuffy nose, ferocious headaches and/or migraines, more fatigue and brain fog, more FMS pain, extreme nausea, sinus pain, nose bleeds, more eczema, itchy body, rashes, dizziness, and much much more. I get these in extreme degrees and all depending on what the substances are. Various chemicals in the air I breathe, such as perfumes and fragrances and cleaning chemicals, really affect me badly. Sometimes the substances affect my brain chemistry and affect my moods negatively, too.
I do have many issues with chemical and environmental smells/odors. I wouldn't say it completely runs my life but I work pretty hard on not being exposed to things at least not in my own environment. I just never called it MCS. My son also has problems with FM and various chemicals. I would like it if you could elaborate a little more on what your experience is with it.
I am really happy to hear you take a very holistic approach to your FM and other illnesses. Without a doubt pain meds are needed, I take them every day. I find though individuals who are not looking at what they put in their body are much sicker though. So it does help to address FM from the inside out. And it goes without saying if you have sensitivity to chemicals putting them in to your body will eventually kill you. And all the chemicals we are exposed to even in our own homes (carpet,bedding,laundry detergent, cleaning products) all need to be looked at closely.
If you believe that the holistic approach may be best for you by all means go that route. I am sorry that I did not understand that to be your question. I thought it was related to "tolerance." Hence my suggestion that possibly some day your system may change and you might try small doses of pain relievers.
In my area there are some great physicians that practice holistic medicine. Some ppl find relief with that approach and I am hopeful that you will also. I tried holistic methods for years but it was not beneficial for you. We are all different.
Topamax does help many ppl with migraines. I think it bears looking into. I would not rule out beta blockers either but that needs to be a decision made between you and your physician.
Best of luck to you.
Thank you for the information. Your information sounds more like what pertains to me. Many of us with FMS also have MCS. Glad you don't have it. It makes dealing with the FMS a lot harder. You're right that it's autoimmune. The abbreviations stand for Multiple Chemical Sensitivity.
I do take digestive enzymes, but as they're all different formulas, I will look into the one you mentioned. I also take probiotics. Most of us with FMS have IBS. So, yes, I am particular with my diet. I have to be, since both FMS and MCS have food issues to contend with. With the MCS there just seems to be more food issues than with the FMS all by itself. I avoid heavy amounts of sugar and soda. Sometimes I slip, but not often. I pay too high a price to slip up too often. I also have GERD, which it seems to go hand in hand with the IBS for a lot of us with FMS. I agree that a strong narcotic is not the fix all. I've been doing everything I can to deal with the whole picture because of the sensitivities to the pain meds. I have this one area which has been giving me the most pain the last few days, so I'm mostly interested in using the strong pain medication to get over the hurdle, rather than depending too much on it. I grin and bear the rest of the FMS pain, but this has been that awful pain that prevents good sleep that so many of us with FMS are all too familiar with.
I will be asking my neurologist about Topamax soon. I have chronic migraine disorder, so I won't have to jump through hurdles with the insurance coverage for Topamax like some do who are using it primarily for FMS. It sounds like it may be the right preventative for me to try. I've heard a lot more good than bad about Topamax for both migraine disorder and FMS. I've been reading up that instead of starting at 50 mg that we should be starting at 25 mg and build up slowly 'til it is at a therapeutic range, which may be at least 100 mg to 200 mg. The neurologist wants to try a beta blocker next, but I may be able to persuade him to let me try Topamax. He said we have plenty of time to try various things for the migraines since migraine disorder is something I was born with and will have the rest of my life. We're just still looking for the right preventatives.
I don't think she is correct. I am very sensitive and have wasted more money on prescriptions because I can't tolerate them. Vicodin will give you the WORST rebound headaches you will ever experience. I took vicodin for years for back surgeries and FM. I had headaches for each one of those years. It was awful. My doctor switched me to oxycontin, no headaches but a lot of side effects. So he started me on the lowest dose of oxycontin for weeks and gradually bumped it up. But I can only still tolerate 40mg per day. I take percocet for breakthrough pain.
There is a pill, Topamax. It is for headaches. It is something you start out slowly and take every day. It will keep those re bound headaches away.
Now do not believe you just need to build a tolerance, your body is telling you something when you get side affects. Some side affects are temporary but when they last more than 2 weeks it's not a good thing and you will have other medical issues to deal with.
I always preach this but look at other things you are doing. Do you take any type of enzyme? There is something called "essential enzymes" it helps your stomach digest foods, and in my opinion the pills I need to take. My husband is diabetic and I have him taking an enzyme with every meal. It helps him so much. Also, what do you drink? are you drinking soda? do you consume a lot of sugar. All of these things can add to these fellings of dis-ease. Just because you take a strong pill like a narcotic it's not a fix all. If you have FM, and I am not familiar with MCS but I assume that is an auto immune problem, FM is so affected by foods, what we drink, not drinking enough water, and our over all environment. So please look at the whole picture. I hope this helps a little. Take care.
Hi FurballsMom:
In reading your post, it seems that your system needs to adjust to the medication. In your case, it sounds as if you were getting too large of a dose therefore, you should try taking half of what was presribed except for the Oxycontin. You cannot cut those in half, you will get too much medication.
I too had the effect you had when first taking the Fentanyl. My body had to adjust to the medication. I agree with Tuck in trying a less potent pain reliever. I think you should be alright after that. Good luck and warm wishes,
Molly
I had to ask because my pain has been high again lately. Not too long ago I made a big mistake and took a whole Tramadol. That was a BIG mistake. It didn't really help all that much with the pain and I ended up throwing up. I tried to take just half of one last night. The pain is STILL bad and now I'm still nauseous. I've had the same problem even with Hydrocodone. It even gave me ferocious headaches. I seem to be LESS tolerant than ever. Far less tolerant than I was a few years ago post op. This is very frustrating when it comes to dealing with pain. Too many NSAIDS and I'll end up with gastritis again. Definitely don't want that again.
I don't think the word is tolerance. I think your friend was trying to tell you that it can take awhile for your system to adjust to the medication(s). I would think that if you took them for a few weeks and you still had severe issues with them that you system may not be able to adjust to them.
You are correct about Zofran. It is not normally prescribed accept in extreme cases. It is very costly.
Your system just seems not to "like" opiates, for what ever reason. I have had what I call an opiate migraine post-op. There are still occasions that I develop a bad headache (not migraine) that I contribute to the opiate I take. When that happens I take ibuprofen and it is effective. I have not had the nausea and vomiting, accept post-op that you describe.
Possibly in time you may be able to try one of the less potent ones. Our systems do change. If your experience was post-op that indeed could have been a factor. Surgery disrupts our normal balance.
I cannot take any of the "Big Dog" narcotics. My system just won't adjust to them. I am just thankful that I can take hydrocodone. I wish I had a good suggestion for you but unfortunately I don't other than to give it a try again if your pain is high.
Our members may have better suggestions for you. I do wish you the best of luck and hope you will keep in touch with us. I will look forward to hearing your updates.
Peace,
Tuck