That's not what I meant to post... stupid computer!

Les, thank you so much for your DH's story and the info. I'm so sorry he had to suffer like that. I will get the book immediately and tell your husband thank you from me!

Nogreenthumb, I had sinus problems for years - it took prednisone, steroid sprays etc. to clear it up, and then a few years later, I had foot pain, too. The foot pain is a killer, I'll tell you what.

Amy, I agree about embracing my body and all it's peculiarities (including disease). I have to love and tolerate myself and all my little processes, so that I can heal. I really believe that. The alternative is self-loathing and focusing on my body's betrayal of my whole body community - I just don't think that can be good.

Daisy, thanks for the info. My disks are apparently not very bad, just likely to be the source of some of the pain I'm having. I'm so thankful they're not worse. We'll see what the lumbar scan looks like *fingers crossed*.

Valinsv, thanks! I'll see how the naturopath goes. I'm hearing that they might be very expensive, and maybe more that I want to pay. I'll have to think carefully before I jump into this one. I'm going back to the allergy specialist at the end of this month to resume my allergy shots. I hope I continue to get better with the allergies. They've already improved so much.

Piper, I'm so sorry your mother's time was so hard. I hear you loud and clear. Thanks for that reminder and the hard-won message. I'll keep on top of my health!

Snicky - Ouch! The doctor said that I wasn't too badly compressed, but that's it was likely worse in the past and could be variable now.

Thanks, Jan! You're very kind. You've always been a great encouragement to me, on this board. You're a wonderful, warm hearted woman.

Thank you, Sky! : )

Magothy, I'll likely try to get on with things. I had to know what was wrong. You know the story... severe, unexplained pain is worrisome. Now that I know where it's coming from, I'm less likely to whine as much. : D

Prairie, thank you. It sounds like you have not had an easy haul at all.

Jodi, thanks for the post and the offer. I'll definitely hit you up for more information.

Thank you, Lindy!

Flyleft, that's exactly what I've been afraid of since the last doctor. He made me too aware that fibro would be an easy way to pigeon hole me, get me off his back, and I'd be a nice little prescription cash cow. It's definitely crossed my mind, but I think this new doctor is really trying. He's young and he really seems to be putting a lot of thoughtful effort in. I'm encouraged that he's not whipping out the Rx pad. He's also willing to write referrals, willing to research and ask for help from older doctors. I think he's a good doctor in the making.

Thank you, Walkin!

Mari, big thank you!! You've hit a few nails on the head. I'm always concerned about throwing money away. I'll always go for the stuff I'm already paying for, first. : D I have tried diets and supplements in the past, expensive pee and hunger... that's what I mostly accomplished.

Thanks, Jen! : )

Decorpas, thank you, I will be diligent. I have had migraines, so thanks for the info about magnesium. Not at all thread-jacking. No worries.

Thank you, Amy (postum)! : ) ...and Hoyamom! : ) Georgetown in the hay-ouse! (No, I wasn't a student there, but I spent a lot of time there over the years for lots of reasons).

Flyleft, I'll tell DH what you said about massage. We're really lucky to here because of hte big massage school. Ithaca IS lousy with good massage therapists.

Thank you, Kfca, I'll check out the book.

RM, that's very kind, thank you so much!

Jodi, thank you for the recommendation. Spinal stenosis is ba-a-ad. I'm so sorry. My FIL has been struggling with that. He's had relief with physical therapy, but what a horrible thing to have to deal with.

Alicia - Lyrica did relieve my pain, but I was SOOO high on it. The doctor thinks it's likely the best drug to try, but he's doing a little research before prescribing it. I'm so glad about that. I'm taking SO much ibuprofen in the meantime, so I hope I can get something good soon.

Thank you, Linda - that's my hope too!

Thanks Mitch! : )

Squirrel, I know the hormones definitely did a number on me and I also know that MSG *is* a problem for me. Funny, I didn't know there was a fibro link. MSG causes horrible headaches and more for me. I'll check out the wiki.

Judy, wow! 1987! That's a long time to be lugging that dx around. Thanks for the advice and encouragement. What kind of shots did they give you for the sciatica? Prednisone?

Elenkao, thank you so much. You're very kind.

Delta, thank you very much!

Prairiegirl, chemo... I just can't imagine. That has got to feel like torture. You're a tough cookie, though, I'll bet!

Squirrel, I will power down some water right now! Thanks for the reminder. : )

...and, shoot! I meant to put this on the conversation side.

Where the heck is my head?!?!!? D-d-duh.

Lynne~Chemo Brain!? Great, one more for the list, LOL. I'm off to see what I can find...

Chicory~Tough? I dunno. That which doesn't kill us makes us stronger!

Hugs to you . . . let solving all our decor problems be the distraction you need when you need it. :-) I hope you have a good restful sleep soon.

I'm so sorry Chicory, what a big bummer. I don't have any experience with either fibromyalgia or herniated disks, but it sounds like you're already getting some good advice in those areas.

Keep your chin up and take very good care of yourself (sometimes that's hard for a woman to do, but your body and mind need and deserve your kindness and tlc right now). Big hugs!

Prairiegirl, there's some info on chemobrain at the link below.

Chicory, I had some herniated disk about 20 years ago, and they settled down after a few months.

Good luck to all.

Lynne

Here is a link that might be useful: Info on chemobrain

Not the best news in the world, but at least now you know and can start looking for what works for you. No real advice, only good wishes.

I'm so sorry for your unfortunate news. Please research and try anything that might help. My DH came down with shingles in October and had a horrible siege - tried all types of meds to reduce the pain, had to use a walker, one day couldn't even move to get out of bed. The doctor put him on lyrica and that really helped him with his pain. He still takes lyrica as it has helped when others didn't work.

I had chronic pain due to an injury on my foot ten years ago. I know it was acupuncture that helped me get off the Tens unit. However, I do have a great acupuncturist, and I have friends who have not had success with it so I really think the practitioner is the great determining factor. If you decide to give acupuncture a try - use someone that others have had success. One thing that I have learned is that acupuncture should not hurt ( have heard stories from people that they were in pain with the needles. My acupuncturist said if it's done correctly, people should be able to relax and many take a nap. I got my husband, who formerly, was skeptical about alternative medicine (he majored in bio-sci in college) to see the acupuncturist. His pain was so bad that he was willing to try acupuncture and he's getting better.

I also read Dr. Sarno's book and while my DH had a business trip in New York, I called months in advance to get an appointment to see him for my pain (this was years ago). He had been inundated with phone calls, after a feature on 20/20 and wasn't seeing anyone who didn't live in NY. However, the book had some great tips, and you might want to read it to see if it could help you, too.I don't know where you live, but I found out that there is a hospital in Southern Ca. that does techniques similar to Dr. Sarno.I had called that clinic, but many of the techniques that were utilized, I had already been doing (seeing a biofeedback doctor, doing exercises, physical therapy, etc.)

Now, at a physical therapy facility, I'm doing water exercises in a 94 degree pool and that has helped me. That, along with massage, might bring you some relief.

Good luck to you - and may you find practitioners who can give you some relief.

I don't have any advice, Chicory. But I just wanted to say that I am so sorry you are going through this. ((((Chicory))))

Just a short post. By the time I was 40 if I figured I would likely be putting a gun to my head by age 50 (I kid you not). Nothing worked & yes we spent thousands upon thousands trying. Therefore, having nothing left to lose I did something controversial. I had my 2 root canals removed. Today at 45 I hope to live until 90 something like both my g-mothers. Im not trying to start a heated debate, itÂs just something to Google about. Perhaps it will help someone as someone elses post years ago caused me to research & find my cure...err, no my cause too.

I'm sorry you are going thru this, I really, deeply am.

KAT

Chicory, so sorry you are dealing with this, but I'm glad to hear that now at least you have something concrete to tackle/research/etc. Thinking of you and sending pain-free thoughts...

(((( Chicory ))))

Mari

Chic', glad I could help. One thing I do in long threads like this is pop open another browser window or tab with the same thread in it so I can refer back while I'm writing my response. It really, really helps. Some people write their responses in Word or Notepad while they have the thread open, too, and that also works. Plus you can save your response and come back to it. That's usually what I do when I have something long, just in case my browser crashes! (And in Word I can spell-check, too. LOL)

FMS is both over-diagnosed and under-diagnosed. It's over-diagnosed in that some doctors will use it as "I don't know what it is so let's just call it FMS" and under-diagnosed in that many people (mostly women) are told that they're just stressed or depressed when they really have FMS. (This new-ish Cymbalta ad about "depression hurts" doesn't really do us any favors in that department. Sure we're often depressed. Wouldn't you be if you hurt all the time, didn't sleep, and had to completely change your life? Funny thing is, on good fibro days, we're rarely depressed!)

Whoops, gotta run (okay, stagger)... appt with the paindoc this afternoon. Back later to finish up in another post.

to read this thread. I am so sorry for all of you suffering from pain or illness. In the prior 60+ posts, many have stated their problems. Yet, you are all so willing to be of help to others. I have people in my own family who wouldn't give a cup of water if someone were dying of thirst, yet so many of you are offering not only decorating help, but consolation and friendship to "cyber-friends". Bless you all and good wishes for quick returns to health.

Chicory, I'm another poster with FMS. I can SO relate to your having to take notes to reply to messages. I have to do that, too, and it's one reason I don't post on the board very much. I'm going to try Johnmari's suggestions next time.

Some things that have helped me:

1. A book called "Fibromyalgia & Chronic Fatigue Syndrome: Seven Proven Steps to Less Pain And More Energy" by Fred Friedberg. He has CFS, so he has a lot of understanding of the DX. He approaches FMS and CFS from a "coping" rather than "curing" position. This may not be something you're ready to think about right away, but for me (I have had this for 18 years at least) it was very affirming. Some of the most frustrated people I've met have been those who insist on 100% total vibrant health 100% of the time, and if they have a diagnosis like FM it's pretty much impossible to get back to that point. When I can manage to say to myself "This is who I am, this is how my body works, and this is what I HAVE to do to get by" then I can be more contented...even though I don't necessarily feel any better physically.

2. Magnesium. It has helped my migraines and it relaxes the muscles a little bit. It also relaxes the bowel muscles, so it's not something I can take a lot of.

3. Vitamin D. I was tested for Vit. D deficiency and found to be on the way low end of normal. Taking a supplement has helped my sleep, and has lowered my pain quite a bit.

4. Ultram (Tramadol) This pain drug takes just enough of the edge off of my pain that I can get to sleep at night, and can make it through the grocery store, things like that. It doesn't take away all the pain by any means, at least not at the dose I'm taking. My preference is to stay at the lowest dose possible and only take it at the times when it helps the most.

5. Pacing myself. Yesterday my DH and I went shopping. I made it through Lowes, Home Depot, a salvage store, and TJMaxx. Then we went out to eat. I was limping and snarling by the time I got home last night. Today I am in mucho pain and am as stiff as a board. I hate having to pace myself, and I hate that I can't keep up with DH and the kids anymore. It would have been much better to do one store per day, or even one per week.

I hope some of this helps...I guess if nothing else you're learning from this thread that you are not alone!

Prairie - don't be modest - chemo is tough. I watched my father come home sick, over and over, crying and throwing up and eventually begging to die. You know the cave scene in Harry Potter 6? That was what it was like to watch my father - I always thought JK Rowling must have seen something like that. It's not a pretty *therapy*.

Martha - I do love me some decor! It's my favorite distraction.

Ladyinmue - I'm doing pretty well & I'm staying positive. I'm confident I'll find a way to feel a great deal better.

Lynne - I think my cervical disks are settling down, but I'm not sure about the lumbar disks. I have to get those checked. I'm so P.O'd at the doctors (several) who missed this.

Littledog - thanks! It does help to know * what* it is.

Momintennies - I' m really looking forward to some hot tub time. Ahh! Tens machine... you know, after my car accident years ago, that was the one thing that really did help. I suppose I just have to get used to the idea of being high all the time - that Lyrica is *freaky*, but it works.

Thank you, Acla, very much!

KAT, I was at that "shoot me now" point, sincerely, this past fall. I cried a lot. Stress seems to lock me up. I have had 1 root canal, but it's resin - no mercury - is that still bad?

Polkadots, Thank you!

Mari (mry-type), thanks!!

Mari (john-type), I find I'll write less if I have to *write* it down. I have a tendency to over edit and get of track when I write on the screen.

Yeah, I don't feel depressed - rarely do, actually.

No greenthumb - I couldn't agree more - this forum is packed to the gills with the most thoughtful people!

Sapphire, I'll look for the Fred Friedberg book. Thanks for the pacing message. I find myself analyzing commitments through a totally different filter than others (mainly DH) - I just can't spend my energy frivolously. I'll try vitamin D.

Chicoryflower, I'm late responding due to slow internet issues here. I'm sorry to hear you are dealing with this new diagnosis. I think your humor, creativity and take charge attitude will be great assets as you navigate the new path ahead. I don't have FMS, but was diagnosed with cancer 6.5 years ago (with 3 kids including a baby) and know how difficult the initial diagnosis stage of a serious or chronic illness can be. Take it one day at a time. I remember thinking my life was forever changed and would never be normal again, but sure enough a "new" normal did set it and life moved on. I remember reading back then that newly diagnosed people go through a sort of grief process--anger, denial, acceptance, etc (not necessarily in that order and not everyone experiences all aspects). So be gentle with yourself, learn to say no when you need to, arm yourself with as much information as you can, and know that you are a strong person. You're in my thoughts and prayers.

Ach, I should have remembered this right off (can you say memory problems? :)): there's a great site that started a few years ago called butyoudon'tlooksick -- it's dedicated to folks who have FMS, Lupus, Crohn's, etc.-- all sorts of "invisible" diseases that make us have to ration out our energy in a way that well folks (or our earlier well selves) just can't understand. There's a great story about the spoons there that started the whole thing off--I'll link to it.

You have empathy from me in this Dx. I was diagnosed in the early 90's after one of my girl friends kept urging me to see a specialist. She has FM also so was aware my problems might have a diagnosis. I believe I have had it since childhood. It's interesting to read about childhood FM and I urge parents with "sickly or malingering children" to research this.

I have now seen several different Rheumatologists over the years and only the last one was of any use. He said don't tell them if you ever have to go to Emergency for anything as all it gets you is the back of the line. True words altho tough to hear. I did however feel he understood the problems. Most of the others IMO did not altho they made the diagnosis. This condition is very misunderstood by both lay people and professionals.

Because I react adversely to many Rx drugs I avoid them. I use healthy diet, a few supplements - cal/mag, multi-vit, Vit D (necessary in the north anyhow), meditation, and aromatherapy which has changed my life. I believe aromatherapy works because it is said to affect the limbic system and possibly to increase endorphin production. Anything which provides more endophins will be beneficial.

I try to eliminate white sugar and flour from my diet, no carbonated beverages, no junk food, little red meat. It's not an easy path but is healthy. I no longer have fibro-fog altho if I fall off this narrow path for a few days it will return. I have a warm/hot bath almost every evening. I take Benadryl for sleep occasionally. Eliminating problems and stress from one's life is crucial even if it means giving up certain relationships. Adopting the attitude that you deserve good is beneficial as is the attitude that you can and need to help others in whatever way is possible for you.

Exercise can be beneficial and is often encouraged but I advise care in this. Learn to know your limits. I cannot count the "flares" which have been triggered by overdoing activities. I find it necessary to realize that I can no longer do as much as I formerly could. This is difficult for a very independent and stubborn person but is part of my life now. It does not mean that the quality of my life is reduced, merely that things are different now. My GF and I often joke that it's not life-threatening, merely inconvenient. That's the most important thing, a sense of humor. There are days I lose it but try to find something to laugh about frequently and to find joy in small things outside myself.

All the best to you in your journey to be the best you can be.

just a heads up and thanks for saying i wasn't hi-jacking...hope this isn't taking liberty with that kindness! but i hate having learned this stuff and not sharing with anyone who is in pain.

many people have mentioned msg problems here. it is one of the culprits for migraines and other pain-related illensses. it is hiding out in a lot of different foods! e.g., soups and spices (restaurants are really horrible for msg sensitive people). sugar substitutes have also gotten some really bad press lately for causing all kinds of problems (memory, pain, ra, migraines, etc). please be careful with the diet sodas, et al!

best wishes to you, chicory and please don't feel like you need to respond. take it easy and take care.

I just saw this commercial on tv for FM it had a web site to get free info on FM.

myfibrorelief.com

ChickoryFlower;

My root canals weren't that old, both less then 10 years. They were done by different oral surgeons one being a specialist. No mercury, porcelain caps even though they were both molars. Ive always taken care of my teeth & my health (hippy vegetarian naturalist since 16) but because of my diet of sticks & twigs (as Hubby calls it) they started breaking off. After a brief fight with my dentist in which I told him if he didnt take them out I WOULD, he removed them. As I was coming out from under he was holding one up saying "The customer is always right!"the roots were black & decayed. I had a constant infection running thru my body for years with who knows how many different types of bacteria! I had him drill 1cm past the tooth in order to further rid the decay in the jaw bone. Instant relief? No, it took 4 days & a Zpak.20 days for the extra 10 pounds to come off too, added bonus.

I was there, I could barely get out of bed. Once I couldnt get my knees working so I had to crawl to the bathroom before I peed myself.

I really hope you find something that helps you feel better & if you get some time perhaps you might research what helped me. Today I'll be heading out early to our new land to help with clearing & pond digging....a few years ago I'd be in bed crying.

Hugs & kindest regards;
KAT

Chicory,

Just wanted to wish you the very, very best in dealing with FM. I don't know a lot about it, but someone I work with has had it for years. I wonder if it is immune related. I have had to deal with chronic pain, and I worked my way out of a condition that was so painful and debilitating, it nearly ruined my life. I didn't use any medications or herbal supplements, but I did rely a lot on stretching exercises, therapeutic massage, walking, hot baths, rest, and good nutrition. I hope you are able to find something that helps you. Most importantly, never ever, ever give up, and know that others are thinking of you and wishing you well.

{{gwi:1593313}}

Chickory,

So sorry to read your post about your diagnosis. Chronic illnesses are so difficult to deal with. I've learned so much about FM from reading these posts, so one thing you've done is help spread the word on this disease and have enlightened at least this group of people!

Keep a good and positive attitude - that's 90% of the battle!

Take care,
Carole.

Back. Too tired yesterday to finish. Paindoc went well... great folks. We're fiddling with med dosages so I feel downright horrible and he was very sympathetic, unlike so many doctors who just tell you to get off your butt and deal, because he knows I'm not just sitting around whining. He told me I was "one tough lady"! LOL Had to make a quick trip through the grocery store after since we were out of the usual bread, milk, blah blah, and that stunk. Didn't make it to the drugstore to drop off my new scripts, I'll have to drag myself out to do that tomorrow when we're not having an ice storm. Feh. :-)

Anyhoo. WRT being "high" or "stoned" on Lyrica, that's often caused by being on too high a dose to start. My doc titrates the dosage up very slowly, starting folks out with just 50mg at bedtime for a couple of weeks, then 100mg at bedtime for a couple more weeks, then 50 in the AM and 100 in the PM, then 50 in the AM and 150 in the PM, then 100 AM and 150 PM, etc. up to 300-400mg, although he has a few patients up at 600mg (yikes). If they're too fuzzed at 50mg to start, he drops them down to 25mg. The sleepiness/dopiness generally wears off a few days after each dosage adjustment, which is the main reason for slow titration. Some dumb@$$ doctors just throw a half dose or even the full dose at patients right off and wonder why they can't tolerate it. If Lyrica isn't tolerable even at very low doses after a few weeks, there's also Neurontin and several other anti-seizure meds (seriously) that have been used off-label for FMS for years.

Rotating meds can do wonders for preventing development of tolerance. For instance, if you do OK with NSAIDs, take ibuprofen one day, naproxen another, ketoprofen another, diclofenac another, etc. (Those last two are prescription. If you explain what you want to do, most docs don't have a problem with multiple Rxs.) Taking NSAIDs with Pepcid or Prilosec drastically reduces the risk of GI effects, although they're still rarer than some people would have you believe. Ditto for sleep meds like Ambien or Benadryl - if you rotate 'em, each individual one works longer and you're less likely to have rebound insomnia.

prairiegirlz5, I'm glad to be of help. I didn't know about the "laundry list" either until I was b*tching on a CFS mailing list about a dozen years ago about being up to something like five different diagnoses all at once for various symptoms and an "old hand" told me that it was all just "part of the total experience" (ha ha). Can't tell you how many people tell me I must be a hypochondriac or have Munchausen's or something if I list 'em all! *amused eyeroll*

Also, I don't know if you realize, but cognitive dysfunction is a major part of the FMS package - we call it "brain fog" or "fibro fog". Thankfully my DH and Mom learned to "speak Mari" years back because some days I just cannot talk to save my soul. I actually write a LOT better than I speak because I can see what I was "saying" 30 seconds ago, when I'm talking I can forget the first half of a sentence before I get to the second! That's frustrating because I feel like a total idiot. I make lists and always make sure to put them in the same place so they're easier to find. People who say you should never put anything on your fridge can stick it in their ears :-) that's where all my notes go because I have to go past the fridge to leave the house. The Calendar section of Microsoft Outlook is invaluable - I use it to remind myself to do things like pay bills (the ones I don't have on autopay, anyway, now that's a lifesaver!), give the dog his heartworm medicine, blah blah, because otherwise I'll forget. First thing I do every morning while my bathtub is filling is check my email, and that day's reminders pop up at that time.

WRT poor sleep - for most FMSers improving sleep function is almost the #1 thing that helps the most. There have been studies done with healthy volunteers where the researchers woke the study participants up every time they reached delta-level sleep. Within a week to ten days every single one of the participants developed FMS-like symptoms! When they were allowed to go back to sleeping normally, their symptoms disappeared. Fascinating, huh?

Amitriptyline = Elavil, a tricyclic antidepressant. It is used in very small doses (usually around 5-10% of the usual dose used for depression) to enhance sleep efficiency and improve pain tolerance in many different types of chronic pain, especially neuropathic pain and migraine. Up until Lyrica came out the tricyclics were pretty much the "first line of defense", because it works so well for a great many patients - in fact, some FMSers don't need anything else at all. When I was on them I started out with 1/4 of a 10mg tablet, to avoid the common "hangover", and I've heard of people having 1mg doses made up for them at a compounding pharmacy! The tricyclics are one of the few classes of sedating medications (along with trazodone IIRC) that don't mess with the all-important stage IV delta sleep and can actually improve it. Rotating between a few different tricyclics on a yearly or half-yearly basis can help keep the benefits rolling along. I'll probably go back onto one of the tricyclics later this year; I gained weight and my guts locked up like Fort Knox on Elavil but there are about a dozen others out there. The cyclobenzaprine (Flexeril) that CMC takes is also part of the tricyclic family, although its effects are primarily muscle-relaxing. I rotate Flexeril with Zanaflex and Skelaxin.

I'm looking forward to milnacipran being approved here in the US later this year. The study results from Europe are pretty encouraging. Always good to have more options!

An uncommon but surprisingly effective pain relief med (for many forms of chronic pain, not just FMS) is an OTC cough medicine (!!) called dextromethorphan - it's usually kept behind the counter at the drugstore because of dimwits trying to get stoned on it. I've used it in the past at the suggestion of my previous paindoc to "boost" my other pain meds and it does help "kick them up a notch". Dosage is usually 30-60mg every 8 hours. Delsym is the best OTC form (30mg per teaspoon). It is also available by prescription in higher doses and in capsule form, but since it's available OTC a lot of insurance companies won't pay for it. Ask your doctor to look into the clinical trials that have been done on it.

There's a lot of stuff on the web about a supposed "cure" using another cough medicine called Guaifenesin (nicknamed "Guai"). It's experimental, anecdotal, and very controversial - only one real clinical trial has been done with it that I know of, which showed it to be completely ineffective, but its proponents insist that the study was incorrect. It's a darn rough treatment, though, with some heavy-duty effects (bad, bad flares are actually to be expected for months and even years, depending on how long you've been ill, while on the treatment). I managed it for two months and had to quit because I was completely nonfunctional, worse than I had ever felt up to that point, and within days after stopping returned to "my normal".

BTW, I should clarify that I don't think drug therapy is the be-all-and-end-all of FMS treatment. It's just that there is SO much misinformation out there... I think now that Lyrica is on the market, a great many people think that's all there is when there are literally dozens of different things to try.

Forgot to say, the FM Network site above keeps a doctor referral database going for members. I need to send for an updated list, the one I have is a few years old and I wonder if anyone new has shown up in town. :-) They also have a great pamphlet that you can order to give family, friends, and employers that explains FMS in layman's terms and does a pretty decent job of getting across that this is a serious problem. A packet of 50 is only $6 - you probably won't need that many but perhaps you can share the order with another FMSer.

Jan, there are genetic components, autoimmune components, structural components, traumatic components (like a car accident or chemical exposure), all depending on that particular person. I'm personally of the opinion that there are actually several different disorders all under the "umbrella" of fibromyalgia, each with different causes, but we just don't know enough to tell them apart yet.

Wow. I just don't even have the energy or brain to make it through that post, johnmari...I just slog away with my tramadol in the day and cyclobenzaprine at night. I really don't think I could keep all those straight--you're amazing.

Well, I've already encountered a few people who have "the cure" and it's only been 3 days. My unwillingness to try their therapy is evidence of my desire to be ill. I'm mental, apparently.

I do believe the fibromyalgia diagnosis is accurate. Looking at my test results and the notes from the doctors, it all lines up. Also, I'm looking at my diary and it is getting clearer and clearer that that's the only reasonable diagnosis.

I'm happy to give it another go with the Lyrica because it really did significantly reduce my pain. I did start on the 50 mg at bed time for 1 week. The doctor did scale it back to 25 mg, but I dropped it because he wasn't listening to me and I needed someone who would.

The current doctor seems to think that 25 would be a good starting dose and also thinks it would be OK to use St. John's Wort if I encounter mood issues like I did last time. That's meaningful to me. I know Hypericum works for me - don't care what the research shows, it's good stuff. I don't think the mood thing will be as bad, because I was just so sick... I think that was half of the reason I was so depressed and nearly suicidal. I couldn't escape the pain and felt like a slab meat with a credit account... very abused by the system.

The previous doctor suggested pairing Lyrica with a longer duration nsaid like Aleve. I can't get up in the morning because I'm too stiff and in too much pain. I can't move for about the first half hour and can barely walk for the next and then can't stand fully upright or walk straight or without pain for the next hour after that. I used to be a morning person! : )

I'll try the Aleve at bedtime and a pepcid-type chaser.

I think I'll get a lot of relief from exercise, but I have to go to the physical therapist and I just want to stay chill until I have more spine scans (make sure there isn't more going on back there) and an appointment with the othropedic specialist and physical therapist.

I've messed myself up trying to do yoga or walking even, so I think I'd better just cool my jets until I know how structurally sound I am.

Does anyone else with FMS have difficulty with blood drawing or blood pressure cuffs? Usually benign stuff like that really, really hurts. How about bras? Purses? I'm having incredible difficulty with both.

Thoughts on shoes?

Thanks again, everyone, for being so kind and supportive. I really appreciate the encouragement and camaraderie here.

Mari, I will join the FMnetwork or whatever it is. I combed the site and it seems to have the most helpful information. Thanks for that.

Flyleft, between brainfog and my hands not working very well (although typing does keep them more limber than they would be otherwise) it took me over two hours to write that. :-) But I think the information is important to get across and so it's worth my time to write it. You lay tile and chase a kid around - I blather on and on! LOL I have been working hard at making my paragraphs shorter so posts are easier to read.

"Does anyone else with FMS have difficulty with blood drawing or blood pressure cuffs? Usually benign stuff like that really, really hurts."

Yep, it does. That's one of the hallmarks of FMS - things that don't cause "normals" ;-) any real pain are very painful for us, because of how our brains and nervous systems work. Except for the pain clinic folks, nurses always look at me funny when I make faces while getting my blood pressure taken. It hurts, dangit! Having them use the non-dominant side minimizes the aching afterwards because you're not aggravating it with use.

When you are going to have blood drawn or an IV inserted, especially if you have tiny little veins they have to dig for, ask the doctor for a script for EMLA cream beforehand. Apply a visible layer to the spot where you'll get the needle and cover with an "occlusive dressing" like a Tegaderm (or even saran wrap in a pinch) for 15-30 minutes. It will completely numb the area for 30-45 minutes. EMLA is routinely used in pediatrics but there's no reason for adults not to use it if need be.

How about bras?

For days when you don't need the girls "perky", look into Decent Exposures. Their UnBras are soooo comfortable and can be customized with shorter/longer straps, in-between sizes/different-size cups, latex-free elastic, etc. Every bra is made to order. Leisure bras are an alternative that's often less expensive, but the band is often not very soft. Front close bras are easier to get on and off than back close, and avoid ones you have to wrestle over your head (like most sports bras). I wear the "make 'em look perky" bra for as short a time as possible, since the only thing that makes the bodaciousness look good is an underwire, and trade it in for a less-cute but comfortable one as soon as I can.

Purses?

Very unfashionable but a waist/fanny pack is pretty much the best thing there is, especially if you have trigger points in your shoulders, neck, and upper back. If you can't bring yourself to go that route, get a smaller purse so that you carry the absolute minimum of "stuff" with you, and switch it from side to side often. If you have to lug a lot of stuff around for work, get one of those wheeled totes (your employer should actually pay for one under ADA regulations, but a lot of folks don't want to push that envelope) and again, change hands often.

Thoughts on shoes?

That takes experimentation because everyone's feet are different, but plan to kiss high heels. flip-flops, and strappy sandals goodbye if you haven't already. My favorite shoes are my NAOT clogs - pricey (about a hundred bucks a pair) but they are the most comfortable for my feet. Easy Spirit makes good footwear IMO, and they have a nice selection of cute shoes (and boots are on sale right now!). Try calling a couple of podiatrists' office and asking where the best shoe stores in your area are. Most areas have at least one shoe store that has some interest in dealing with "troublesome feet". If podiatrists' offices won't tell you, break out the phone book and start calling shoe stores. Ask if they carry specialized shoes for diabetes, plantar fasciitis, arthritis, etc. If they do, that's where you want to go.

Oh, and re: physical therapists... make sure you go to someone with extensive experience with FMS. Sports-oriented PTs will tend to push you too hard and take the "no pain, no gain" attitude. Water therapy in a warm pool is great because you can just float and rest when you need to. The local chapter of the Arthritis Foundation tends to know where the warm pools are in your area.

OK, so I thought I was being really finicky when I winced and snarled at tummy exams, blood pressure, and needles. I do have tiny, pathetic veins... the last time I had an IV, I was literally in tears. The nurse was awful, too, but none of the other nurses could get my blood or establish an IV. It took me 4 weeks to heal.

Thanks so much for the tips on the bras. I had taken to wearing a semi-snug camisole, but even getting that on was a bit of a pain... I pulled it up like a bathing suit, but getting my arms in and then jackin' it up on my shoulders just about half killed me.

OK, so I'm like a princess now, or something. Only a large, Irish, spotty one. : D

I was thinking about getting Doc Martens, but the break in time is definitely something to consider... I'm wobbly. I'll check out diabetic shoes. I have to wear diabetic socks because I can't stand regular socks - it really hurts my skin.

I'll definitely get access to that list of doctors and figure out where the pools are. That's all really very helpful. Thank you!!

...I don't think I can do fanny packs. I'll have to get one of those wallets on a chain and start dressing sort of gear-head chic perhaps. : D

Chicory - I was so sorry to read of your diagnosis. I really don't know much about Fibromyalgia, but have already learned more than I knew by reading here. I have suffered from migraines for over 20 years, and I have degenerative disc disease in my lower back that sometimes renders me unable to walk (I am 45). I certainly empathize with anyone who suffers from a painful, chronic illness.

What I have learned from having these ailments (and other traumas in my life):

1. Take care of myself first. Get enough sleep, eat right, exercise, take vitamins (I also find magnesium helpful).
2. Believe in something bigger than myself, and ask for guidance from it. I choose to call it God.
3. Ask for help when I need it.
4. Accept my illness and the limitations it may put on me. This has taken me years, and it doesn't mean I don't get angry about it sometimes.
5. Remember to be thankful for what I do have.

I am sending hope, prayers, and good wishes your way!

Jana

Jana, thank you so much!

I'm so sorry about your spine - that really is awful. My grandmother had 3 bad disks in her lower back and she suffered horribly. She thought her hip was broken when it first started.

How does this happen? Is it just genetic? Heavy lifting? Bad children? : D

Chicoryflower,

I have tardymyalgia, but please accept my support anyway.

Maybe you won't get the spaciness, but if you do, try making lists.

I'm at the stage of life where I have to make them, and it helps. If I get off track and do something that's not on the list, I put in on there and then cross it off. That little sense of accomplishment strengthens and encourages me.

If I'm in bed and can't sleep, I can sometimes write the problems out of mind and get a little peace that way.

((Chicory))

Chicory I'm sorry you have FMS and herniated discs. So do I and I've lived with it for decades.

Everyone is different and FMS is a "garbage can" dx. Something that will help one person won't help another. We all have to experiment to find out what works best for our own bodies.

I went through years of doctors, pain clinics, vitamins and herbs... I was so miserable I'd try anything to get out of pain. They hooked me up to a computer at a chronic pain clinic and I pegged their needles! I have herniated disks too (had C4-5 surgically removed as well). I've had them try to put me on anti-depressants and for me they just made things worse. I've had the trigger point injections, and traction, and PT, and orthotics -- you name it. Worst of all, I got into a mindset of being a fragile sickie and I just hated living life that way. So I stopped with all the doctor business and decided to find ways to help myself, and immediately began enjoying life more.

I'm in PT and going through tests right now for low back/hip/leg pain, but I don't think that's because of FMS, and I hope this will be just a short-term thing. I do suspect that I'm going to adopt some back and neck exercises I stick with long term, though. I will look into Dr. Sarano's books (thanks Chelone).

I'll tell you the things that helped me most. First, good sleep is critical. I switched from a waterbed to a good foam mattress (I had them assemble it for me at a foam shop and saved a ton of dough) and that helped me immensely. On rare occasion I take something to help me sleep -- one Melatonin and one Benadryl does it for me without "hangover." I avoid drugs whenever I can. There's still something to be said for a smart diet, plenty of water, exercise, fresh air, reminding myself frequently of good posture and a good attitude.

The thing that helped me the very most was adhering to the blood type food lists. If I'm good about that an astonishing number of my symptoms clear up. When I first started on it, I got about 75% pain relief within just a few days. If I'm bad about it I suffer. I've heard doctors say this is bunk but there's no way it's bunk to MY body. It's gospel truth for me. I went cold turkey for a month. Then I tested some of my favorite no-no foods out one at a time and learned what each does to me. It's something that's entirely free to try, so I'll put a link to it here for you. If it works you'll be awfully happy, and if it doesn't, well, it doesn't. But don't let anyone talk you out of trying it for yourself. That's the only way you're really going to know.

I'm also thinking of looking into Feldenkrais right now, which helped a friend of mine a great deal. I just haven't found a class near me yet. Has anyone here done that?

Hang in there, Chickory. With time and patience and experimenting, you'll find what works best for you.

I am just so sorry that you and others have to go through this.

I am keeping you all in my thoughts.

Chic, sorry to hear your diagnosis, but like others have said, it's good you know so now you can take the appropriate treatments, etc.

I have 2 sisters with FM so I know it's no picnic. My thoughts and prayers are with you.

As for the herniated disc's, I've had surgery on the one that was causing continuous crippling pain and still have others that aren't bothersome to that extent. That book Les talks about sounds interesting. I think I'll investigate it.

Take care.

Hi, Oceanna. Thanks for the tip on the blood type diet. It's funny - a lot of the stuff on the list as medicinal for my blood type are my favorite foods. I guess I should indulge more. : )

I didn't know disks could be removed. How does that work?

Thanks, Anele. I'm so glad I'm coming to this diagnosis late. There are so many on this message board who have been struggling with this for years, through skepticism and mistreatment from doctors, etc.

HOpe you find a way to manage your pain, I know nothing about fibromyalgia but i have 2 herniated discs. every once in a while (after I do something i shouldn't and over do it) the pain comes back and is excruciating i can't walk , move ,do anything!. i was told by my dr. i needed surgery, but no way would i do that without trying other things first. physical therapy taught me the right exercises, and i learned on how to take care of myself when it starts to feel like somethings gonna "snap". I will pray you will find relief, and hopefully feel better. everyone has given you lots of suggestions here, and i'm sure you will find something that works for you.
i'll think of you and say a prayer everytime i see "chicoryflower" on this forum, which is a lot!!! take care!

Jamies, tardymyalgia? Is that being late for everything? I have that.

Graciesmom, thank you. I did about 4 feet of snow pushing and realized it was time to head back in. I could feel the burn in my neck and back. Not a good feeling. I used to think that was just muscles, but now I know better. I feel like such a wimp.

I used to shovel the whole driveway and all around the storm drain, and across the road at the fire hydrant. Maybe this is what's wrong with me? Too much overdoing it?

chicory: I don't have a damn thing to say that can help you or make you feel better, and for that I am truly sorry. I *can* say, however, that your positive and accepting frame of mind, and just your all-around good cheer, will probably go a long way in taking some of the weight off of the diagnosis itself, as well as helping you to heal. So many here have such good advice, I'm sure you will beat this thing into submission in all the right ways. :) ((((((Chicory))))))

Chic, I'm glad you looked at the food lists. I hope you give it a try and find the same kind of results I did. I was amazed and delighted... and at least that is something that is in my control every day. Everything we eat stays in our systems for 3 days, so if we eat a no-no it plagues us for three days after. Ouch! Literally. I found my post-nasal drip disappeared, along with my heartburn and a pesky little cough. Even my fingernails got stronger. As an interesting aside, when I follow those food lists I have no gas ever. Very cool! Oh -- I also almost never get sick any more. I used to get every cold/flu that came down the pike.

I printed out my food lists and kept them in my purse for weeks until I learned them. I'd consult them in the store, at restaurants, and in the caffeteria at work. Rather than whining about what I couldn't have, I filled my grocery basket up first with my starred foods, then with neutrals and there was no room/need left for the no-nos. :-) I learned if I couldn't have one thing I wanted I could have something close to it, like no mushroom A but mushroom B was okay, or no melon A but melon B was okay. I learned to read labels like a fiend and figured out what I could and couldn't buy.

Did you see the lists at the bottom? If you're an O married to an A, for instance, you look up the O-A combo list and use that for shopping and cooking. The work is done for you. If folks are in their 20's or 30's they often don't see a huge difference (unless like us they have big problems). But almost everyone over 40 sees a huge difference. The Doc who discovered all this says the damage of eating our no-no's for years is cumulative.

When you're really hurting, try ice packs. They can be wonderful at reducing back/neck pain. If you're cold, put a hot water bottle on your tummy to counteract the ice on your back. I have a U-shaped neck pillow that I heat in the microwave and wrap around my neck in the winter and it helps me fall asleep.

Here's a note I forgot for the folks who take magnesium and get the trots... you can absorb magnesium through the skin by taking a bath in epsom salts (which also just plain feels good and does nice things for your skin), and by bypassing the digestive system you get fewer GI effects.

Another hint for those of us for whom IVs are difficult - ask for a pediatric nurse, if one is available. (Call ahead.) They're used to dealing with teeny little veins. This is one reason why doing your blood draws at a hospital if you can is often better than a freestanding lab office. Just explain that you have very small veins that are very hard to get a needle into, they're typically very cooperative.

Don't make one mistake I did and buy ice packs before you know whether ice is going to work well for you. (I get painful muscle spasms.) Mark a bag of generic frozen peas or corn with a big X so no one eats it, and use that for your cold pack. Wrap it in a thin dishtowel so you don't get cold burns. If you do want to buy gel ice packs, the ones in the sporting goods department at Target or Walmart are better and cheaper than the ones in the drugstore.

Since a waist pack is out despite its practicality :-) consider a tiny bag called a "shoulder wallet". I used to use one of these (until it fell apart LOL) and it really was a godsend for forcing me to pare down my stuff to the absolute minimum. About all I could carry was cash, credit cards, my cell phone, sunglasses, a tiny pillbox, and a chapstick. If I really crammed or left out the sunglasses I could get a packet of tissues in there too. :-) MIL 1.0 brought the one I had back from Italy when she visited there and I can't find one identical to it, but I spent a little time hunting around and this one is pretty close.

Oh, Brutuses - I didn't see your post before. I'm so sorry about your back, and with building a house and all the animals... you poor woman!! How was the surgery? Was it tough to recover from?

Mari, I love those little wallet things. Most days, I don't carry a purse at all, but there are times when I have to.

I was thinking about getting a healthy back bag, but I don't want to spend $$$ to find out that it's not really all that great. I'd be heart broken.

I've also been looking into cargo clothes. I don't mind the pants, but I have to find a good skirt with pockets.

Thank you, Organic! That was very nice of you to say all that. : )

Chicoryflower. I saw this on the news tonight. This treatment is experimental but has helped some people already.They are looking for people to be in the study-maybe something good will come out of it.

Nan, I can't load the video... It's my c-wordy DSL.

Can anyone else see it and tell me what it's about?? : )

I've suffered many years with fibro too. I use multiple things to feel better. Use Capasin linament,whirlpool, massage therapy, Naprosin, Tylenol. I also have RSL!! I have pain every day but found the more I work, the better I feel. Sitting around is a killer for me. I have a big house and 6 acres of property. I can still cut down trees with the best of them!!! I just refuse to give into it. I think attitude goes a long way to helping you. I had a laminectomy at 40 years of age because I blew out a disc. However,MANY years latter, I feel stronger than I did when I was young altho the pain level has incresed somewhat. Stay active but get good rest every nite. Years ago I made a commitment to 8 hours of sleep every nite and that really helps. Ice helps me too--have you tried that? If ice makes you feel worse, try a warm pack.

Chicory- A Dr. at Harborview in Seattle is doing a clinical trial using trans cranial magnetic stimulation to alter brain electrical activity. It isn't a cure but It (apparently) really reduces the pain. In the video it looks like they put a small device next to the head- nothing invasive.I guess the theory is the brain is some how amplifing the signal for pain in your body and this treatment interrupts that. Info on the study is at 206-543-9731.

I haven't posted here in a long long while. Sorry you are not doing well. I did a real lot of homework on a medical condition that I had and came across Dr. John Lowe's work on Fibro. He says that in many cases its from an underlying thyroid condition, or a known thyroid condition that is not really under control. When I did my thyroid homework I came across his name in many books about the subject.

chicory, I know nothing of fibro, but I wish you the very best. I am glad you are in a big enough urban area that you will have access to a wide variety of treatment options. It may take some trial and error, but I am sure you will find what works for you. Peace.

Oh chicory, I feel so terrible that you have to go through this. I am sure it is hard for your family, too.

Wishing you the best and keeping you in my prayers,

Kelly