My dad has AS, his 3 brothers tested positive for the marker, I tested positive for the marker (although I’m female and I understand AS is much more common in males), but MRIs don’t show any signs. I have mid/low/sacroiliac back pain. So as for now AS is ruled out. However I don’t believe it’s fibromyalgia either. Sorry for the hijack, but it’s crazy to see the words Ankylosing Spondylitis when I’d never heard of it just 2 months ago…
Oh yeah - neither here nor there, but my wife has chronic pain. At various times doctors have offered the designation “fibromyalgia” for her symptoms, but she didn’t find that name to be of any utility.
Something else that fibro patients might want to take a look at: Cuddle Ewe - chronic pain patients, too. I used to have one of these, and I found it was very soothing for my chronic pain (not, Deo Gratia, fibro, mind you; I have old injuries with arthritis in them). I have no clue why it helps so much with sleep, but it’s clear that many fibro patients find it helpful. There are testimonials on a number of different websites.
I had to give up having one when I switched to an adjustable bed - it seems that the adjustable base isn’t compatible with innerspring mattresses. The viscoelastic (or whatever) foam doesn’t respond to weight distribution alone. 
I’ve won some benefits - I can breathe far more easily with my upper body elevated, among other advantages. I’ve lost some things. I’m not able to sleep as long at a stretch without the strangely soothing effect of that wool only three thin layers of fabric away. You can find testimonials from fibro patients as to the benefits they get from it. Warning: YMMV, as always.
As to Lyrica, it was my understanding that it was originally developed as an anti-seizure med (epilepsy). One doctor I’ve seen along the way tried me with the med that Lyrica is a refinement of (sorry, can’t recall the name, but from the same manufacturer), and I was asked last year to try Lyrica. I did, and it had the same effect as the other similar med - weird states of mind, and weight gain. My son injured his back last year, and is also being seen now at the same pain clinic. They had him try Lyrica. It had similar effects on him, with the addition of making him want to sleep all the time. IOW, not useful for him.
One thing I want to add - I didn’t take note (and should have) of those fibro patients who commented about their reluctance to use pain meds. Within limits, I must agree. Pain meds are helpful, so long as you’re careful about them. It is a grievous mistake to think that if you just get enough of a pain med (or several of them), you’ll quell the pain. Ain’t happening; sorry. The brain adjusts, and it takes more and more over time. Rush Limbaugh is a classic example of how that vicious cycle works. As I understood the story, he reached a point where he was taking daily doses that would have killed a person (or a horse, or an elephant) who took even half that amount.
Do I use pain meds? Yes, I need a certain amount to be at least minimally functional, but I don’t try to get rid of the pain. I just try to reduce it to a bearable level. I also use several other things - lidocaine patches, radiofrequency (burning the nerves), NSAIDs, etc. If my doctor wants to try something new, I usually go along with it. Anyone who treats me for very long soon learns that I know there’s not a lot that anyone can do to help me. I have occasionally joked that what I need is a skeleton transplant - whip me off from around these bones, give me a new set (with good cartilage, please), and most of my health problems would be gone.
I try to avoid answering questions about how I feel. If it’s a stranger or casual acquaintance asking “How are you?”, I say fine (usually a “white lie”), or okay, or something. With a serious question from someone who knows me, I may be a bit more open, but I do not inflict on anyone a list of what’s hurting, unless I’m in the exam room, and the doctor/NP/PA is asking for pain levels.
In my experience, it doesn’t take long to sort out hypochondriacs from people who have a real problem, whether or not medical science understands that problem or not. I’ve been a people-watcher all my life, and I can tell. No, I can’t explain how to tell the difference; sorry. One thing that absolutely does not work, whether the malady is “real”, or results from the fears (or whatever) of a hypochondriac, is telling someone to “suck it up”.
Dripping, I didn’t mean to imply that you know about fibro, in fact, just the opposite. I realize that you were stating your experience but there are good reasons to account for the things which you listed. I won’t go into them here as they would take to much space to explain.
tygerbright, I concur, telling someone to suck it up is seldom helpful. Just because someone may be hypochondriac doesn’t mean they might not be ill.
Yeah, the Vitamin D angle definitely seems promising, although I hadn’t heard about the book before, so thanks for the info. There was a really intersting discussion online recently with a local doctor who is treating folks with Vitamin D deficiency:
http://ww3.startribune.com/blogs/bodytalk/2008/09/22/ask-dr-vitamin/#comments
I actually started taking it a couple of years ago, because there’s a definite pattern where I feel worse when the day length grows short. I noticed some improvement, so I think it’s a piece of my puzzle.
This thread reminded me I haven’t seen my doc in a couple of years, and if I don’t see him periodically, he won’t treat my sinus infections over the phone. While I’m in, I’m going to ask to have my Vitamin D levels tested. I’d think the supplement should be sufficient, but it’s worth seeing where I’m at.
The other thing that really helped was figuring out three years ago that I have a dairy allergy. A whole bunch of problems improved once I got a handle on that.
Guaifenesin, vitamin D, and staying away from dairy. Each has led to improvement, although going on guaifenesin 9 years ago made the biggest difference. Still, every little bit helps.
One reason patients with some sort of mysterious condition list their symptoms in exhaustive detail is that they’re hoping that somewhere in there, you might find a clue to help you figure out what’s wrong with them!
Sometimes, a clinician can notice a pattern or make a connection that someone in the thick of it can miss.
Granted, I’m sure a lot of patients are whiny self-involved jerks, but others are just doing whatever they can think of to help you help them.
My husband has fibromyalgia. It became disabling when they stopped his prescription to vioxx. Until that point his diagnosis was “some kind of arthritis.” He had previously suffered a disabling injury in the army, part of which was the severing of two ligaments and at least one nerve. When I met him he was on crutches and expected never to walk without them. He had excruciating pain when he bore weight on his injured knee. One VA doctor had diagnosed it as a conversion disorder because he did not see anything on the x-ray that would cause the pain.
Shortly after I met him he had a surgery and the surgeon removed bone fragments which were under his kneecap that were causing the pain. The surgeon also resculpted his knee. Within days he was walking with just a cane. Within a couple of months, he could walk without one. At times the physical therapy was arduous, but he did everything they told him would help and the results amazed his doctors and therapists.
Over the next 15 years he sometimes needed a brace to walk, but often did not. When we moved Doctors were unbelieving of his story until they saw the x-rays with the doctors initial showing. He had signed my husband’s knee in dye which showed on the x-ray. After 15 years, not having and AC and arthritis took its toll. He could no longer walk without crutches. He got his knee replaced. He has a nice zirconium artificial knee. He had to do a lot of physical therapy again and relearn to walk because he was no longer knock kneed. It was hard work, but he never slacked off. He had arthritis pain, but dealt with it with vioxx. No other medication touched his pain without tearing up his stomach or making him crazy or triggering an allergic reaction.
Then they cut his vioxx.
The deterioration was rapid and scary. All the little odd things that had been wrong with his health were magnified. He could not sleep and suffered all the indignities of chronic sleep deprivation. He suffered bouts of inflammation which pinched nerves and at one point mimicked an aneurysm including unilateral impair sensation. He also started getting terrible migraines nearly every day.
We learned to manage his sleep by getting him a recliner to sleep in. Part of the issue is that he has chronically low blood pressure. Without vioxx pumping up the pressure, he did not maintain good blood flow to his extremities and would wake with his arms in great pain, cool to the touch and on pins and needles. Finding the right chair helped a lot. He could get several hours of sleep at a time. The low blood pressure means that many migraine medications are right out. The last one he tried caused his pressure to crash. Lucky thing I was home at the time. Imitrex helps a bit, but even than is limited in what it can do.
During all of this, he was tested for sleep apnea, and also had a stress test for his heart. His resting heartbeat is about 50. During the stress test the only pain he complained of was in his ass. His glutes hurt from so much running. That clued his arthritis doctor in that it might be fibromyalgia. He had the irritable bowels and various other symptoms forever. The doctor tested his pain points and he had all but two on the list. We had never heard of this, but is was good to have a name.
He had always been a hard worker. He doesn’t like being still, and doesn’t like not having something physical to do. He always did nearly all of the housework, except when we were first together and I did not have a job, and even then, he did the dishes and vacuuming. When he stopped the vioxx, we had to take over some of his chores and make accommodations for him to avoid the most pain inducing aspects, but always, always he wants to get his stuff done. He doesn’t just say he wants to do it, he pushed himself to do it and got mad at us if we stepped in.
One of the hardest lessons he has been learning is that sometimes he can’t. He must save his energy. The spoons story really helped. It framed what he experiences in a way that he can deal with.
Over the years since he had the diagnosis, I have seen him slowly lose sensation in his fingers, and lose fine motor control. Writing, even with the jumbo pen I found for him, is quite painful. Typing causes inflammation and pain. I see him declining, but in many ways better management has increased his quality of life from what is was just after the vioxx. He now gets almost enough sleep and sometimes goes for as many as three days straight without a migraine.
One of the most important ways the diagnosis helped was that the doctor steered him away from massage therapy and convinced him that if something triggered pain in his muscles to STOP IT. His muscles don’t seem to heal anymore. A pulled muscle which used to heal in a few days, now may be sore for months. A rough massage will be paid for dearly and not help anything.
He can’t sit except in a couple of chairs that support him just right. He can’t stay on his feet very long without a break. He can’t lie down at all. He often has a migraine and even when he doesn’t, he can’t be in bright light, light which seems normal to me. He can’t be on his feet very long. With all of these restrictions, he can’t hold any job, and he is now on social security disability. And sure, he gets down at times, but this is not caused by depression. It is not to get out of work. He still is mean to me when he has spells that are so bad he can’t do any thing around the house. He resents that I am doing what he sees as his work. It may take him all day to get through a task that takes me an hour, but dammit, he wants to do it himself, and will when he can.
And Lyrica? it is not possible for him to even try it. His reactions to related drugs were so exteme, the doctor doesn’t want to try it at all.
Quite true. I know I went through a pattern that I think isn’t all that uncommon. When I first started having problems, I’d go to the doctor with a vague complaint or two. He’d tell me it was all in my head. I’d wait six months or a year, and I’d feel worse. I’d go to the doctor with a vague complaint or two. He’d do tests, which would be negative, tell me it was all in my head, and send me on my way.
So I avoided doctors, because all they’d do is tell me I was crazy, and who was I to argue when the tests came back negative?
Years went by, and I finally hit a flare that incapacitated me for a while. It was scary, and the “it’s all in your head” routine wasn’t helping when I’d lost so much weight my pants were falling off of me. So I became very persistent and provided lots of information, thinking that maybe the problem was that I had been too vague before and simply hadn’t told the doctor what he needed to know. But when all the tests came back negative and he told me there was nothing wrong with me, it scared me, because by now, people were asking if I was on a diet or something, because I was so thin and frail looking.
All this did was really convince the doctors I was nuts. Then I was rearended and ended up in a lot of pain. I was diagnosed with fibro. Went to a fibro clinic that taught me a ton, sent me to PT, OT, etc. and taught me to self-manage. By now, I understood that the doctors simply didn’t know what was wrong and couldn’t help me, so I stopped bothering them, except for specific things that they could write a prescription for and send me on my way.
Then I found guaifenesin, and I improved so much that I no longer needed the five other prescriptions I was taking. So now there’s no real reason to talk to a doctor. I see my doc because I get a sinus infection once a year, and also when I had an abscess that had to be surgically drained. But I don’t talk about the fibro, because I get it now. He can’t help me–which is why I started laughing when he volunteered that when I told him I have fibro. I had neither asked for his help nor described any symptoms. Just being honest in telling him my medical history, because I was a new patient.
Everyone I know with fibro stays as far away from doctors as humanly possible. To the point that you can be pretty screwed up with non-fibro problems before you’ll seek medical attention.
Yeah - Vioxx was the one med that seemed to work for my wife w/o zonking her out. She often said she’d voluntarily accept the associated health risks.
The latest Staff Report (via the newsletter) discusses this:
Do you get the guaifenesin without a prescrition? I would like to try this. I have noticed that when I take Nyquil Cough before bed, I wake up feeling wonderful. It doesn’t contain guai, but it does contain a good expectorant. But it would be crazy expensive to treat myself with the stuff on a regular basis.
I fall into the category of people who stay clear of doctors. I was just paying him to write a prescription. I have been buying my meds online from a pharmacy in New Zealand where no prescription is needed, and cutting out the useless middle man. I just buy the same NSAIDS I have taken for years. I suspect I have some other problems that need attention though, and will have to break down eventually and go see him.
Please tell me more about the guaiphenesin.
Mucinex is OTC.
Definitely don’t treat yourself with Nyquil–not the same thing at all, and probably dangerous to do so.
You can learn more about the guaifenesin protocol from a book called What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand and Claudia Craig-Marek. You can buy it many places, or borrow it from the library. If your library doesn’t have a copy, ask for interlibrary loan.
There is also more info at http://fibromyalgiatreatment.com
Anyway, you’ll need to learn about the protocol before trying it. There’s a titration involved to find your dosage, and other things you need to know to use it successfully. It’s too much to explain in a post, but it’s explained in the book. That’s how I learned. I did have my own doctor help me at the time, because guaifenesin was a prescription med back then. He didn’t think it would work, but he also didn’t think it would hurt, and we’d run out of options. Heck, even I didn’t think it would work.
Anyway, all guaifenesin is over the counter now. There are prescriptions that contain guai, but they also contain other medications and you should not use them for the protocol.
I hope this helps! Sorry it took a while to respond–lots going on at the moment.
http://apnews.myway.com/article/20081020/D93UFL202.html
Any one of this lady’s “symptoms” that could not have been diagnosed as consistent with fibromyalgia?
Note the annoying photo captions, which presents as factual that this (obese, middle aged, white woman) “suffers from environmental illness,” (bolding mine), when even the none-too-skeptical article body does bother noting that her only diagnosis is from a known quack.
The aluminum foil on the inside windows is a nice touch. What is it about foil that folks like this find so appealing?
Also note the vivid “insides feeling like fire with ground glass in it.” Wow. That’s pretty well calculated to trump any uppity cancer patient’s or amputee’s ace.
Final paragraph: without her tinfoil shack, she literally “couldn’t survive.” Let’s give it a go – let’s take away the indulgent/co-dependent hubby, plunk her down in the middle of a prarie wagon train in 1840. My wager is she’d either get to foraging for food, or malinger by the trail side and prove Darwin right.
N.B. to those who say that no one should care what “fibro” sufferers choose to call their “disease” – this couple is already well along the way to an ADA claim based on her “environmental illness.” If a judge is goofy enough to accept her claim, expect many more of the same, at the expense of your wallet (or, the view outside your window with some crazy neighbor’s zoning-violative foil shack).
Wonderful. The aluminum foil over the windows is a dead giveaway that we’re dealing with a total nutcase here. What could that foil possibly do for her? How does aluminum foil keep environmental dangers at bay? But, I’m reminded that many schizophrenics employ aluminum foil for many purposes. It is often put on tv antennas to keep the “rays” away and to protect people from alien signals, etc. And I’ve also seen people who fashion hats and helmets out of aluminum foil, again, to protect themselves from the voices, or from attack from outsiders. It’s an all-purpose material for wackos of all sorts.* I’m thinking that Alcoa should start to market a line of specially formulated aluminum foil, just for the folks who find it…comforting. Maybe “Ray-proof” or something like that. Hoo boy.
*Yes, it’s not particularly nice to refer to people with mental disturbances as “wackos” but they are considered to be disturbed precisely because their behavior is so wacko. Allow me this for the sake of the post. thanks.
My thoughts exactly. I guess it just goes with the territory.
Or wait – maybe the foil keeps any stray ink molecules from getting in (for we learn, now, that ink is among her many many antagonists):
Let us count the ways in which her position (like that of the “fibromyalgia” sufferers who insist that their pain is of a variety not susceptible to the amelioration provided billions of others by cheap analgesics) is just silly:
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So, a garden shed, no doubt ineptly “sealed” with tin foil, containing no overpressure that would suffice to keep positive pressure on any seams such that allergens would not creep in, is to be analogized to a bubble such as used by real-world immunosuppressed persons? Really?
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So “living in the car because I couldn’t be in interior spaces at all” was previously getting the trick done? And the car is . . . an exterior space? Not full of dust and soot and outgassing vinyl and foam?
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So only “organic cotton” is acceptable? Gee, isn’t that more expensive and hard to find? But oh, hey, someone who needs nothing but that must be an especially rareified sufferer.
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“Death sentence.” Nice. Real respectful to those with actual terminal conditions who would or will die quickly, with or without legitimate medical intervention, to analogize your shed-based therapeutic regimen to their plight.
In a sense, this lady is a piker, because she admits that there are relatively low-tech solutions or satisfactory ameliorations to her “condition.” As I understand it, in the right-of-the-Bell-curve versions of these hysterical conditions, the last thing that is to be tolerated is the notion that there could be a point at which stasis has been reached and no further inquiry, altering of regimen, or god forbid, diminution of ATTENTION, need be contemplated. Which suggests to me that if, I don’t know, they were to allow her to keep her shed by planting some shielding band of trees, she would NOT for long stay satisfied that she had her “illness” at bay.
I tend to agree with a lot of the people who posted comments at the site above pointing out that there is a wrong way to do things and a correct way to do things. To be perfectly honest, they should have simply made a cleanroom in the house with sealing the walls, ceiling and floors with a non-VOC paint, and creating a positive pressure system for the room itself with filtered air using a HEPA and blower system that outs a .5 lb overpressure in the room, You can seal the windows but the overpressure keeps air from seeping in. The ductwork for it should be about $80 to $300, the fan might run another $60 - $100, the HEPA filtration I oculdn’t give a guess to because I am more used to industrial filtration … and the controller for the blower/damper system would be about $200ish for a basic Johnson controller. Not sure how much for a competent architect to draw the plans for the zoning board and permit department.
Then you run into furnishing the place … but I notice that in the picture of her, she didnt have any airlock visible, and I believe she is wearing bog standard clothing … looks like blue jeans, a long sleeve shirt and a vest.
They probably could have put a white room into the house for what it cost them to put in an illegal ‘inlaw’ suite in a garden shed.
mrAru is a piker - all I got was grab rails :smack:
If people were suggesting that there was a more “correct” way to create a “cleanroom” for her, they are completely missing the forest for the trees: SHE DOESN’T NEED A CLEANROOM, as witness the fact that her stupid jerry-rigged garden-shed-plus-tinfoil is apparently “working” to “ameliorate” her “condition.” Viz., the fact that the “wrong” approach to a cleanroom seemingly satisfies her tells me to a reasonable degree of scientific certainty that there was never anything wrong with her in the first place. The solution to THAT fact is not to move the cleanroom indoors and make it truly hermetically sealed. It’s for her to face the fact that she’s not, in fact, going to die without a cleanroom.
I entirely agree she doesnt need a clean room, I am just pointing out that that yahoo spent over double what it would cost to put in a no shit cleanroom in the house. I am so seriously afraid that If I was the interviewer, my main crack to her after she described how sitting in her car helped … and looked around at the garden shed the first words out of my mouth would be something along the lines of ‘You have got to be shitting me, you can make a clean room for under $5K US and you have this halfassed shithole? Did you not even bother to research clean rooms for environmental sensitivities?’ and promptly have her cuss me out and throw me out.
Dayum, she is wearing freaking blue jeans, long sleeved polo and what appears to be a standard fibrefill vest. Nothing she is wearing stands out as looking like hypoallergenic organic cotton clothing. Hell, it even look slike her damn shed is lined with Olin Chem foam insulation [those blue panels are fairly unmistakable] and I am amazed her tin hattism doesnt also make her hypersensitive to aluminum …