Let me start by saying I saw your email the other day and wanted to respond sooner but I have been totally swamped. So I don’t want you to feel ignored.

Obviously I can’t give medical advice but I will share some info with you and you can do your own research so you can ensure you have the best possible health care team working for you and so you can truly advocate for yourself to get the care and relief you deserve.

I will have to (try to) be brief on this response since my sleep cycle is very messed up lately (gee, could it be my fibro, my sleep apnea, my anemia, my pain disrupting my sleep, my medications affecting my daytime drowsiness… hard to say!?).

Anyway, here is what I feel I can responsibly say in the most concise way for now. (Hopefully I’ll be able to get into more details in a future post).

1) As with almost any illness, every patient is different. What works great for one fibro patient might exacerbate symptoms in another.

2) You need health care practitioners you TRUST on your team… who truly believe in such a thing as fibro. If your docs don’t believe in it, the care you are given (or should I say the lack thereof) will be a direct connect to their lack of understanding the illness they are trying to treat! Some possible examples of potentially helpful team members might be: a massage therapist (particularly one with training in fibro); a rheumatologist; an acupuncturist; possibly a physical therapist… The list goes on. There are more and more resources out there all the time… as fibro is becoming more recognized. The awareness generated by the drug company ads has made most TV-watching American adults at least somewhat familiar with the word fibromyalgia.

3) Prescription meds may work great for some fibro patients but be disastrous for others. Many fibro patients are ultra-sensitive to chemicals, preservatives, fillers, allergens, and toxins that might fly under the radar for “apparently healthy” patients for now… but may come back to haunt them in later years. (I predict fibro rates will continue to rise). If you have fibro, odds are your body is more vulnerable than the average person’s to a wide variety of insults. What I’m trying to say is that a prescription might be perfectly helpful for you (that’s something to discuss w/your doctor/medical team)… OR it might not be helpful for YOUR particular body.

4) No doctor or human being can predict how a particular prescription will affect you for certain. Only you can decide what is right for your body based on the info you have at hand.

5) Some “old fashioned” techniques help many fibro patients. I have a friend w/fibro who swears by “castor oil packs’ applied topically, for example. Or heat packs can works wonders. For some, hot baths too.

6) You may respond to “alternative medicine” modalities such as homeopathy. (You’d want to find someone well-trained in this to help you choose the homeopathic remedies that would be appropriate for you).

7) You may need to curtail your activities a bit. You may be doing more than your body can handle. Perhaps backing off some tasks might give you some needed relief.

I could go on and on and on but you get the idea. There are many ways to approach an issue and identify potential solutions.

Let’s just say that you know your body best. If you notice a certain food/s aggravates your symptoms, try eliminating the suspicious foods for awhile. Try keeping a log of your symptoms, the weather that day, what you ate that day, what activities you did, etc. You may discover PATTERNS. Avoidance of triggers can really help!

My friend (fibro patient) has repeatedly injured herself vacuuming. Her physical therapist has advised her “no more vacuuming”. Every time she has a flare-up after vacuuming and she mentions it in conversation, I ask her… “WHY are you vacuuming? You’ve been down this road b/4″. Her response is that her (very supportive) husband wouldn’t vacuum things the way she likes it. My response to that was (not to be cold/I love my friend very dearly but don’t want her hurt)… “well, then maybe you’re going to have to choose between a less-than-perfectly-vacuumed-carpet” and being in agonizing pain.

My point is that there are MANY steps you can take in everyday life that can minimize the extreme flare-ups in severity, frequency, or both.

It’s challenging but there is hope!

So, I hope something in here is helpful to you. I’m sorry I can’t list off more details now (plenty more in my head since many of my support group members have fibro and tell me their experiences).

I need some sleep, though. It’s 12:05 am my time and I’m just touching the surface of scanning me inbox for new emails.

Please let me know if any one this info is helpful.

Jeanne

What you’ve gone through sounds terrible. My boss has fibromyalgia and I never really understood what it was – and I definately didn’t know it wasn’t taken seriously. Everyone’s health, or lack of, should be taken seriously by the medical profession.

My mom was diagnosed with this a couple of years ago, and she said, “I can’t believe this is what you were going through all these years.” (I was diagnosed 18 years ago) She never said she doubted me during that time, but yeah, I could feel that she was skeptical that I was just being a hypochondriac and a crybaby. (Karma’s a bitch, huh?) And that was my own mother! I don’t tell most people I have this for that reason.

I do think stress, depression and lack of sleep exacerbate my condition. But then sometimes everything is going great, and I have a massive flare up anyway. I hurt every single day, but some days are worse than others. I’ve been going through this for so long that in some ways I just ignore it, work around it. If things are really bad or I have some big thing to get through, I’ll take a pain pill, but that is a rare occasion – like once every 3 months.

I work through the pain, because I have to and because I choose to. I won’t let this stop my life and the things I want to do. I do wish they’d figure it out and find the cure though.

My mother-in-law is one of the millions of uninsured Americans who are already sick. She’s a missionary and can’t afford many potentially good treatments for her fibro.

She is paying for the Lyrica and says she has noticed some relief.

However, Mogul said he is very optimistic that he can treat women’s pain more effectively in the near future. The fact that Lyrica (the only medication designed to treat Fibro) has come on the market, it is believed, helps to legitimize the pain as valid and real, the article said.

I know my mother-in-law endures terrible pain with this condition. It does make it worse when no one can explain the pain, prescribes anti-depressants instead of pain treatment (which even though there is a connection between pain and depression, feels like they’re just calling you crazy), and no one has anything but a bunch of loose layman hypothesis (like drinking barley green, like unto puke) to treat the symptoms.