Fibromyalgia #178
 

Post here

Good Morning everyone!

My husband just left to take a friend without a car to work. My head feels like it's going to explode. I'd be in bed, except I think being upright takes a little of the pressure off my head and will maybe allow the sinuses to drain.

It's only 14 degrees outside, and the thermostat says 75 in here, but I don't trust it. (Why do you think the temperature OUTSIDE always affects me so badly regardless of the temperature inside - how do my bones know it's 14 degrees outside?)

I think my husband is "catching" fibro. He has his own pain issues - a bad shoulder injury, osteo arthritis, ad a degenerative bone and joint condition put him on disability about a year after me. If he continues to follow in his mother's footsteps (he inherited the bone and joint disease from her), he's in store for multiple joint replacements before he's 60 (his mom has had 3 hip replacements, a wrist replacement, and both her knees need to be replaced - she's in her early 60's and looks at least decade younger. Just another one of us who "doesn't look sick.")

Anyway, the reason I say my husband is catching fibro, is although he's always had pain issues, season and weather change never bothered him any more or less than any other time, but a lot of the things that bother my fibro are now bothering him. I've been weather-sensitive (with my sinuses at least) all of my life, and I'm not sure if it's barometric pressure changes or temperature and humidity changes, but hubby says I'm more accurate than the weatherman when it comes to predicting a storm 24 hours in advance. Now hubby has become just as accurate a weather predictor, and on my weather flare days - he's flaring too (You can imagine how pleasant two people in severe pain and fatigue are, especially with no one able-bodies person to help out).

Sorry, I'm starting to moan and ramble. My point in posting here was to ask if everyone else is this weather-sensitive and if you've found anything that helps you get through weather change and winter itself. Generally, once it gets cold and stays cold, I feel a little better, but winter is generally **** for me.

Hubby (since he now understands what winter and weather changes are like for me) and I have been talking about selling all of our stuff and moving into an RV full time to follow our comfort zone, or ride around and experiment until we find a place we're semi-comfortable all year. Any snowbirds or RV full-timers out there, what special challenges does the fibro have? Are we nuts? (Well, the general answer to that is an obvious yes, but I mean specifically about the RVing).

This fall/winter has been so horrible, I'm ready to leave today (not happening, but I'm getting desperate. I used to enjoy winter and now I'm dreading for the first snow to stick - we've already had several days of snow, but no accumulation on the ground yet).

Yes, kaplods...my FM is very weather sensitive. I am fortunate to live in Florida right now but even when we have a cold spell, such as we are right now, I get achy all over...especially the outside area of my hips, shoulders and neck area and ankles. The only thing that helps me is to maintain pain management (Tramadol and Advil) on a regular schedule, stretching, and keeping the areas warm with a wrap up in my down comforter at night. Not a fun situation but I won't let it get the best of me. I should make a visit to my chiropractor but hate to spend the money for short term relief. Good luck...Kate

Thanks Kate, I don't know where I'd be without my tramadol. I'm at the maximum dosage of eight 50mg tablets a day. In the summer, I can get away with 5 or 6, and occasionally 4. I can't take any NSAIDs, so I take tylenol and fish oil capsules (I started taking the fish oil when I found out I couldn't take NSAIDS because they were causing asthma symptoms - going from prescription relafen. Fish oil has some anti-inflamatory properties, so I figured it couldn't hurt. It's helped alot, but it took time to get used to being off an NSAID).

My husband and I are sharing an electric throw. I go to bed earlier than he does, so I get the blanket until he comes to bed, and by that time my comforter is warmed enough, I'm pretty comfortable. Still, tomorrow is payday so we're going to buy me my own electric blanket. His legs and hips bother him, so the throw is large enough for him, but since my whole body hurts, the full electric blanket will be an improvement.

I try to stay active, but in the winter it's a lot harder. The warm water therapy pool is great, but finding the motivation to go swimming in the winter is a challenge. Being in the pool is wonderful, but getting out, getting dressed and going back out into the cold to go home is daunting. If I ever won the lottery (not going to happen, since we don't play, but maybe once a year), I definitely would get a heated infinity pool - and live in it.

If I can keep myself at a comfortable temperature, I can stay pretty comfortable. But the difference between comfortable and too hot or too cold is so small, finding that comfort zone is a challenge. If my bed gets to warm, I have to get out and let it cool down. I feel like Goldilocks, except trying to find "just right," isn't a matter of only three attempts.


Did you see the movie Twister? I told my husband that if we could use the RV to follow my comfort zone - we'd probably have to become weather experts, and instead of storm chasers we'd become storm evaders. I can just see us with all of the sophisticated equiptment the stormchasers in the movie had - "stormfronts moving in, no time to waste, we've gotta go."

Sleep deprivation, weather changes, and refined carbs are my three biggest flare triggers, in approximately that order. Diet is the easiest (at least in theory) to control, sleep I can control somewhat, but weather is the only flare trigger that's completely out of my control. Sometimes I feel if I could control that, I'd be able to get the fibro into remission, or at least under control to where I could go back to work (of course finding a job that allows me to travel to good weather might be a challenge - maybe I could become a travel writer).

Good morning Kate and Kaplods. RVing sounds like fun, but I don't know if I would like to live in one 24/7. My brother and his wife did that for a few years, leaving Alberta (Western Canada) to go to Arizona for 6 months of the year. Now, they have bought a condo at home, and have a modular home in Yuma, and they spend 6 months still in each place. Following the weather could be quite a journey, as it seems there is NO perfect place.

I am very weather challenged as well. Every since I had back surgery, 30 years ago, I can tell when the weather is changing. Both OA and FM do that for me. OA causes my joints to hurt terribly and my lower back and FM causes my body to feel like it is encased in cement and it just does NOT want to move. Also, of course, all the aches and pains that come with both. I usually do wonderfully well in the winter, as here in Alberta, it is cold and dry. However, we are still in the transition, and today my hands feet and arms are very achy, and my lower back is killing me. It is foggy out, so there is moisture in the air and that = pain. I don't mind 20-30 below zero, because the pain levels stay low, and of course, being raised here, I do like winter.

Mima - glad your feeling better and getting back into doing the things you enjoy. Also, happy you found the clothes you were looking for. That could be a real challenge.

Joanne - I hope you get to go to your daughters for Thanksgiving. I have never NOT seen my kids even for 1 month - hmm, I think they or us, are spoiled :lol:

I have never had a colonoscopy. They don't normally do them here unless they suspect something is wrong. We are stuck with doing the Occult Blood test instead. That's the one with the little card, and you have to diet for 7 days, and then give a stool sample for the next 3 days. It is a smelly card, to say the least. I guess I did have one 30 years ago, but it turned out to be an diagnosis of IBS.

Hi Candice - hope your feeling much better now.

Meme - where are you? Hope you are also doing better.

I have a slight sinus headache going on here today. I hope it doesn't escalate. I hate allergies!

Everybody have a great day.

Hey There
 

R.V. living would not be a place for me.. I need my space. My brother and daughter have one. He travels more than she does. He is retired (army)and she is a teacher. She can only go in the summer or weekends.We need our own bed and living space.
I ache more as the weather changes..
Joanne

Oh big time, Anne, on the non-movement and cement body cast! The cold weather makes my body feel like it is frozen...kind of like your hands and face feel after walking when they are cold. The body just doesn't want to function! The warmth is a definite plus where I live but the downside is the concrete floors. No "give" here in Florida...everything is concrete, no cushioning, and it wrecks havoc on the joints. You have to be mindful of wearing good shoes all the time or suffer the consequences.
Kaplods...when I was first diagnosed with FM back in 1980's, they thought it was directly related to my sleep disturbances. Not only do I have sleep apnea (which I now sleep with a CPAP machine at night) I also owned and operated a specialty bake shop and was up every morning at 3 am to "make the donuts" so to speak. The doctor thought perhaps I was interupting a crucial part of my sleep rhythm and that was a key factor in my FM. I compensated for this for 5 years by having massages 1X a week and being faithful to osteopathic manipulations. I did really well for a number of years but since moving to Florida 5 years ago from a New England coastal town, it came back with a vengence. I had hoped that selling my business in New England after 25 years of 3 am baking and being on my feet 15 hours a day would alleviate the problem...nope....worse than ever and now I take the meds to keep me sane. I wish I could say that the South Beach Diet has helped with some of the symptoms by eliminating the refined stuff from my diet, but alas, not so. These past few days of cold weather here (40's) have been brutal and we have one more night of real cold in the forcast. Hopefully after that, things will warm up and I can find some relief. I also take fish oil caps, 4000 mg a day, to not only help the FM but to stabalize my cholesterol. This dieting is hard work, yes??? I hope we all get to that "comfort zone" soon. Off to wrap up in the comforter, folks! Have a great evening everyone!
Kate

Joanne, I missed your post....good luck tomorrow with the colonoscopy. My husband says it's a piece of cake!!! And he's a big baby with that stuff so be assured he's telling it straight. I wish I could just make the appointment and get it over with but being the wimp that I am with doctors and tests.....next spring.....next spring......next spring.

Yeah, I really wonder whether the fibro for me is a result of years of accumulated bad habits, especially regarding sleep. I always worked more than one job, years of swing and double shifts.... While there are signs that I might have even had fibro as a kid, the burning the candle at both ends in my 20's and 30's, probably did the most damage, and ended me here on disability.

One thing I found interesting is the research on fibromyalgia and alpha EEG anomaly. Basically, this means that deep sleep is interupted with brain waves that are associated with being awake (and yet sometimes the person seems to still be asleep). All of my life, from earliest childhood, I've been able to control my dreams to a certain extent (what they call lucid dreaming - knowing you're dreaming and controlling the dream while you're in it). I didn't know what it was until I learned the term in college - but even dreams that should have been nightmares didn't seem scary to me as a kid because I would "redo" the ending. I also had one experience with sleep paralysis (where you continue to dream as you're awake and usually feel someone is in the room with you - this is a possible explanation for many alien abduction experiences - or visits by dead relatives or demons).

My husband suggested that this might mean that I have ALWAYS had the alpha EEG anomaly. I'll have to ask my neurologist, because his specialty is sleep disorders. His theory that many, if not most cases of fibromyalgia are primarily a sleep disorder. He said in studies of sleep deprivation, sleep deprivation causes fibro symptoms in normal folks. Sleep dep studies aren't done very much with people, because in animal experiments, sleep deprivation causes immunity and autoimmunity problems and ultimately death (I have immune and autoimmune issues - so I find this pretty scary - if we can't "fix" my sleep issues, could it cause my death? I also had apnea, but since it was resolved most of my immune issues seem to be resolving).

I find fibro fascinating, although since it's happening to me it's not as much fun as if I were studying a disease that happened to somebody else (ideally no one I knew).

Hi-What is Tramadol? I have an appt with rheumo in a month-neeed some meds. My back hurts so much.
I just love living in FL in the winter-I do think my pain would be worse in MA.
And the pool and hot tub is next door.
Prep day for colonoscopy-had dreams about it for the last 2 nights. Nightmares.
Foot is getting better.
Anne-did you add the sticky? I didn't know how to do that.
Hi to all. Mima

Good morning all....and Mima, Tramadol is a codeine based analgesic that is less habit forming than some of the other heavy duty pain meds. Sometimes it is dispensed with acetominephen (Tylenol) added to it and called Ultram. I take mine with a side order of ibuprofen (Advil) because Tylenol doesn't work for me. While it doesn't knock out the discomfort totally for me, it does offer some relief when I take it with advil. I was given Gabapentin (Neurontin) in the beginning which is an anticonvulsive but is also used to treat certain types of nerve pain. It has the same components as Lyrica but has not been approved by the FDA for use in treating FM. I didn't like that medication at all....I became very agitated on it so my option was the tramadol. I'm not sure if rhematologists use this in their treatment protocol...I would be interested to know what yours says about it when you go, okay? Just for comparison Kaplods, how many "trigger" spots did they find with your diagnosis of FM? They found way too many on me...probably even some new ones for the books! On another note, the temps went down to low 40's here last night with a wind chill of 38. Enough is enough, thank you....it's time for some balmy breezes and sunshine!! Hope everyone is having a good week so far, especially Joanne who is, at this moment , probably in la-la land with her colonoscopy. Will check back later.
Kate (p.s. The big white dog avatar is my Great Pyrenees "Queenie". What a character she is.....rescued her 3 years ago.)

Am I getting these colonoscopy posters mixed up?? I keep thinking today is Thursday and it's only Wednesday so it is Mima I should be offering good wishes to for tomorrow!! Sorry Joanne, do forgive my confusion and Mima... Good luck tomorrow!!

Hey There
 

Hello Everybody- Today is prep day. Tomorrow is "D" day..
Chilly here today. Hubby complaining about heat running.. He sees dollar signs..
Joanne

Hi everybody. For me, today is a low pain day, and a high fatigue day (just can't wake up, so hard to think straight). As much as it's great to not hurt much, I much prefer the pain to the cognitive stuff - pain I can "suffer" through, but I feel so non-human when I can't stay awake and can't think. It just seems like my life is slipping through my fingers on these days.

Kate - I've had several doctors diagnose or suspect the fibro at different times and usually score on 16 or more of the trigger points. I clearly remember one appointment. It was a cold and rainy day, and I had gotten three late night and early am calls for work (I was working a job with 24/7 on call responsibilities), so I hadn't slept much at all the night before - and everywhere the doctor touched (even the skin itself) hurt like mad. She said that I had severe reactions to ALL 18 trigger points (she was pretty rough, though). She did mention that she considers the lower back (the small of the back) another set of trigger points - and that I had a reaction there also.

The hip trigger points are not always sensitive, and I would say give me the least amount of trouble. The neck and upper back are almost always sensitive but to varying degrees, and the knee and elbows are usually the worst. I don't know that my elbow joint has ever been pain-free in the last ten years. I don't remember the doctors ever handling those joints without intense pain (some doctors really squeeze so hard the joints will burn the rest of the day). I do notice that some doctors try to be really careful and press slowly and carefully just enough to know when you feel the ache and others want to see you jump - I guess to make sure it's a real pain response - I hate those guys, because I end us the rest of the day feeling like I'd been hit by a truck.

Have you ever had the whole skin hurt - sort of like it sometimes does when you have a really terrible flu or are starting to heal from a sunburn? When I'm hurting, it often helps if my husband will rub my back as a distraction (it's not really a rub, because he has to run the fingers ever so lightly over my back with no pressure at all, his fingers barely touche my back at all, it's more like running a feather over my back), but more and more, I can't let him even do that, because the skin hurts too much. It really seems to scare him - I think because it makes him think of me as so fragile I'm going to break.

The rheumatologist that spoke at our local fibro support group, said that she doesn't believe in using trigger points as a diagnostic criterion, because the people who developed the trigger points were doing so not as a diagnostic criterion, but to decide who to allow into the research studies. In other words, they knew that if the person had 11 of the 18 trigger points it was unlikely that they didn't have fibro. People with fewer than 11 could have fibro, but they wanted to err on the side of including only people who would be the best examples of a moderate to severe case of fibro. She says she's met people with fibro who normally had few of the normal trigger points, but had only the "sun burn" skin feeling or the sore, overworked muscle feeling.

I wonder whether these are subcategories of fibro, or different manifestations.

The thing is some of the fibro symptoms, I seem to have had since childhood. I was diagnosed with nonspecific colitis in high school (which would today be called IBS), and had very severe monthly menstrual cramps from the very start at age 10. Also from the age of 10 or 11, when my grandmother would hold my arm for support (she was shorter than I) I would experience severe sciatica (although at the time, I didn't know what that was - all I knew was that I hated having my grandmother hold onto me when she walked, because it hurt and my mom didn't believe that it hurt, she thought I was just embarassed).

The diagnostic criteria for a lot of illness are exactly like that. They are taken from the inclusion / exclusion criteria of studies. This is particularly true for illnesses with diagnoses that are otherwise rather subjective or inconsistent across different physicians and regions. It's quite a valid caution. But there's often not much else to use. And they do provide some place to start from. The bigger problem with any guideline, regardless of how it's derived, is that the physician still has to be able to approach each patient individually. Guidelines can't cover every situation. In particular, they can't cover all the endless combinations of comorbidities and medications that real life patients have. Sometimes it's the physician who isn't making that effort to individualize. Sometimes it's outside pressure to conform to accepted guidelines (from insurance companies re: payment of patient bill and compensation to the physician; and fear of being considered substandard in a lawsuit).

A quick check in before feeding hubby so he can scoot off to work for the night! Uhgggg! Kaplods, I was diagnosed with IBS 40 years ago by my quaint little seaside community doctor. He was surely ahead of his time as I was just 15 years old. I have had IBS all my life along with another now-known-symptom...Bruxism. I grind my teeth like there is no tomorrow. I usually have to wear a special night guard to keep my teeth from getting loose. crazy, huh? I have included a fiber regimen at night for my IBS for as long as I can remember and surprisingly, being on the SB plan has helped enormously. I am almost "normal" following this diet. Works for me!!
Hi Julie, I agree that the diagnostic criteria was developed to protect more the medical profession rather than help the patients. It is unfortunate that we can not find doctors in all geographical areas who specialize in these criteria-type illnesses. Too many unknowns about this condition to get involved with it. I signed up at the NFA website and searched for someone in my area for FM and not one doctor to be found. Most of the primary care physicians in my area are not up to date on the treatments or current study information. The pain management specialist I went to gave me the most bang for my buck education wise but still could only offer help in the way of medication. We are our own best advocates and need to educate ourselves.

My doctor probably was behind the times (or just used the diagnosis he was most familiar with rather than the "new" term of IBS), because I was also 15 or 16, but it was in the early 80's.

Crazy though - I've also got severe bruxism. I've apparently always ground my teeth at night, because my mom would complain about hearing it from their bedroom down the hall. It wasn't until I was in my mid twenties that I got a mouth guard though, (I didn't know it was going to cost me almost $250 AFTER insurance paid their share). I really need a new one, because I ground throgh the plastic on one side, but I don't have dental insurance - has anyone had experience with the OTC mouth guards - it was hard enough getting used to the one that was custom-made for my mouth, I'm hesitant to pick up the one size fits all models.

A South Beach style of eating really helps my IBS and fibro too. I need added portion control so I try to choose SB friendly foods, but use an exchange plan to control portions and calories.

It is weird that their are so many "associated" odd health problems with the fibro.

I don't think I would actually agree with that. In the specific case mentioned, the criteria were developed for the purposes of conducting medical studies, and then adapted or adopted for use in the clinical (office) setting.

Most guidelines are developed not to protect physicians, but to ensure a certain minimum level and quality of care for the patient.

I think the guidelines may get used inappropriately if a care provider is either lazy or practicing defensively, but that's after the fact. The guidelines weren't developed for defensive reasons.

Guidelines can actually work against protecting physicians, and be part of the reason that physicians fail to individualize management options. It's very easy, simple and direct for a lawyer to belabor the point that a physician didn't follow a well-accepted guideline. It's much more difficult to get a jury to understand the complicated and subtle reasons why a patient needed to be managed outside of the guideline.

Ok. I'm back. Sorry I've been missing again. I just find myself so busy, and I just don't take the time to get on here and read your posts and post myself. I went away last weekend, so that's my excuse for then. lol

Big changes. Tim is moving home 2nd semester. He's still planning to take classes 2 or 3 days a week by commuting. He said he's just feeling overwhelmed with things, and he was ready to quit school. We reached a compromise, and he is still going to take classes. He admitted that Bob's death is affecting him more than he let on. He didn't want to worry me.

I'm still busy with classes at the Y, so I am staying active. Also doing so much reading, and I'm enjoying just hanging out with the puppy and cuddling up with a book.

Joanne, my BIL called last night and was telling me about the chilly temperatures. It was below 20 here yesterday morning, and I know that I am not ready for this!!

Mima, last Feb. when Bob and I were in southern GA and then FL, I didn't have any pains. It totally amazed me. We planned to spend more time down there this winter, but you know the rest.

Anne, the dry cold has to be easier to handle than when there is moisture in the air. I keep thinking that I'm cold, and then I think about where you live, and I'm sure you are colder.

Kate, I was reading about your bakery, and I was sitting here drooling! Oh my!!

Julie, I am so proud of you weight loss! 50# since April is fantastic!! Any advice??

Kaplods, friends of mine have talked about living in an RV full time. They haven't made the jump yet, but it won't surprise me if they do. Before I was diagnosed with fibro, I was online researching anything I could find about so many different things. I haven't done much in the past few years.

Goodmorning all...another cool but sunny day in Florida. Feeling fairly energetic this morning and not aching too badly ...must be the dry air?? I'll just enjoy the moment! Any good recipe forums or websites out there I should know about? Getting bored with the same old and hubby is getting tired of chicken...:)

And Julie, I understand now what you are saying about the criteria being used to as guidelines for the clinical setting. I guess I should have directed my comments to reflect on those lazy and defensive practitioners who do not utilize these guidelines beneficially. Unfortunately, and I know this may sound unfair, I think most physicians do practice defensive medicine today. Perhaps this is one reason they want to have every test imaginable done so they can cover their butts! Good for patient diagnosis but bad for the health insurance companies. Ultimately the cost trickles down to us, the subscribers. What a scenario..... don't even want to go there.

Hi Tammy, yes, I spent many years bent over a pastry bench. I specialized in pies...savory and dessert along with a large assortment of baked goodies. I've always loved cooking and am finding it challenging to change the way I look at and prepare food. I've always done the "old fashioned like Grandma" kind of cooking with lots of meat, butter and potatoes but now trying to revamp my lifestyle to a low carb, healthy way of eating. I'm looking for some new ground beef casserole recipes to satisfy my husband's red meat needs.

Hope everyone has a great day! Regards to Mima and Joanne....hope the big event goes smoothly.

I think there is a lot of defensive medicine, and in the U.S., it's no wonder why ;). That's really sad. Maybe it will change ;).

More and more diagnostic tests are not truly to the patient's benefit. Because all tests have false positives. That's unavoidable. For many tests that are based on a range of normal values (for example, potassium or sodium levels), the normal range is often defined as that which will cover 95% of undiseased people. So, by definition, about 5% of normal people will be labelled abnormal by the test. Those false positives can mean a lot of mental anguish, for one thing, and certainly additional costs (a big deal in our society), but also generally mean further testing. Those further tests often involve risk (reaction to dyes, exposure to radiation, injury from invasive tests, and so on).

You're right that the cost of all that is bad for insurance companies. I'm no fan of medical insurance companies in general, but they have done a lot to make physicians more carefully choose and justify their diagnostic and treatment options. That also swings both ways - when you're pushed out of the hospital as soon as possible, before you feel ready - that is because of insurance companies, not your doctor. They hire people (generally nurses) to go around and look at charts and tell doctors they need to discharge people.

Be ready, and *know* that this isn't another *try*, this is just the rest of your life. The other stuff is *done.* Not that I was perfect from that moment on, but it was pretty much one of the "click" things. And it's so much more pleasant to base your choices on health, instead of on being disgusted with your body or willpower.

Eat healthy :). I have lots of produce, almost only whole grains, little sugar. I use oil, nuts, avocado, full fat cheeses. Exercise (I do yoga, and have been running a few months now). Don't restrict too much or be harsh with yourself, it has to be maintainable. Good sleep, very important! Plan, and have backup plans. Individualize for you! Always keep going.

Learn new, "normal" portion sizes ;), really, you totally adjust to this and it isn't hard anymore That is really a pleasure.. Hunger and satiety are great cues once you start paying attention to them. It's harder than it sounds, and I'm still working on it.

I started out calorie counting, but stopped (not really intentionally) at the beginning of September, and I am very happy with that. Much more pleasant. But I'm glad I did it for a while, it taught me a lot.

The rate of loss has slowed way down. Which is OK. I'm at a good weight now, so I'm not as impatient, and I feel better about my metabolism if I lose slower at this point.

I am still learning new things and adjusting and tweaking all the time :). As I approach a final weight, I'm have plans to really put all this in writing, to really lay out for myself what works and why. I think that's important for maintenance.

Sorry, don't mean to hijack your thread!

Sleep, weather, stress, (mental or physical), and food (things I ingest)...all affect me and I wear a night dental splint.

I do not get involed in the "political" aspects of FM..too complicated for my brain fogged mind. I just have learned over the years that we can say "no" to the docs for any meds or tests we do not want to take. My whole forties I was over tested and over medicated....just decided on my own to take charge of "me". I do not like docs and do not like meds or tests....but sometimes they are necessary.

They do not teach alot on FM in med shcool..they skim over it, most docs do not want to take the time to learn and there are still some who do not believes it exits.....and some just think we are hypochondriacts...go figure...if they could only live in our bodies:)

The PT(on foot) is time consuming and I am getting behind on unpacking and holiday stuff. Can't really decorate untill the workers are gone and no furniture to put anything on! Everyone seems to think we are all moved in and living normally...that won't be the case for a very long time...so no entertaining here!


Got some good buys at Kohl's and Penny's for my boys so that is done but have to get my familys stuff sorted and wrapped and mailed before to long. I do not think we will be going there this holiday so gotta mail everything..but I Have to find it all!LOL



Today is our 32 anniversay...............

I've had some excellent doctors and some horrible doctors, and unfortunately it isn't always easy to tell the difference at the first or fortieth appointment. I have to say that the fibro and the autoimmune disorder, at least taught me to be a much better informed consumer of medical services. Some doctors do not like well-informed patients, but I avoid those doctors. I won't say all of them are bad doctors, but they're bad for me. I've been very lucky here in WI, because I have a group of doctors, and each understands fibro very well, or are willing to allow me to educate them. If you can find a doctor willing to learn from a patient - do not let that doctor go - that's a priceless quality in a doctor.


Tammy - I definitely can relate to interests shrinking. It seems like my very world has been shrinking since the fibro started interfering with not just comfort, but functionality. I have no doubt that I had fibro a full ten years before I was diagnosed, but because I kept "pushing through" the pain and other symptoms, I ended up in a downward spiral that was difficult to stop.

I am afraid that life on the road could be more difficult than life in a house, which is why we're going to buy something very affordable and our alternative plan (if full-timing turns out not to be feasible) is to use the RV to find the best place for us to settle: evaluating the climate, the state's medical services, the quality of doctors and services... We're not going to be doing any boondocking, because of our physical limitations, so we're probably going to be going from RV park to RV park. Our RV is going to have to be modified in some ways, and we're going to have to pay for services most RVers do themselves, but I've been reading alot on disabled RVing, so I think it at least has the possibility of being a workable solution.

Wow-nie to have so much chat.
That was my 3rd colonoscopy in 5 years-same old diagnosis-lots of diverticulosis and now some internal hemerhoids. But no polyps-hope you do ok Joanne.
I am 70 and came down with fibro in my 40's but had symptoms way before that. For 2 years, I was extremely crippled. And I was working full time with 3 kids-what a nightmare.Now my stomache is more of the problem-IBS-and my back-spinal stenosis. They told me I was taking too much tylenol so I will cut down. Hoping the rheumo can help me. I sure do miss the antiinflammatory.
Wow for making your house look nice for Christmas, Candice.
Tammy, are you still going to GA? I am sure Tim is very sad too-when my husband-their stepfather died-it was such a bad time for them.
It's so good to be home-I took a nap and sat in the sun. Mima

Oh Mima, I feel for you on the 'rroids!! External for me, sweetie!! I am glad you are all set though for another 5?? And hopefully your IBS will calm down enough for you to enjoy the holidays. I am so fortunate to have found the foods I need to avoid and that the SB diet is working so well for me in that regard. My pain management doctor specializes in spinal stenosis and though I have some low back areas that are getting very narrow, I have remained able to function well. My chiropractic adjustments help in that department...keeps things moving.

Candice has made my day as another doctor-phobic FM veteran. Like I said in my earlier post, you have to be your own healthcare advocate when it comes to FM. Most of us who have had this condition for so many years know when to say enough....need that breathing space form the pokes and prods, right? And happy anniversary, Candice. I just had 30 years on 9/11. Crappy anniversary date, huh?? We will obviously never forget, now will we?

I am surprised that so many people are preparing for the Christmas season so early! Even here (FL) people seem to be gearing up. I usually do a big decorate around the house starting the 4th of Dec to the classical "Nutcracker" CD. With the economy falling apart the way it is all over the country, I thought the Christmas spirit would be dead and buried....and I am happy to see it is not so, at least in this forum! Not spending money this year but will be baking my butt off...and hopefully not doing much in the way of "quality control!"

Julie, for some reason I feel you may be associated somehow with the healthcare field? Just a feeling :)...and kudos for doing so well with your lifestyle changes. I am convinced that "weight control" is as much about "portion control" as food choices. Portion control has always been my downfall. Even on the SB plan I have to be very careful with these "good carb" portions. You have encouraged me to look forward to eventually controlling this issue. Right now, my exercise routine consists of walking a few miles daily with the "Queen" and I have recently started back on my elliptical. Wiil take a week or so to build up my time on that again.

Off to do my kitchen duties. Enjoying these chats with all of you! Hope everyone has a great evening....Kate

I just like to to eat!!!!!!!!!!!!!!!!!!!!!!!!...I have been counting pts for WW since I turned 50......and it is a weigh of life now but I pretty much eat anything and sometimes too much:D

Very tired not much sleep and off to PT again...MIma did you get the shot in your heal???????? HOw painful was it??????? OUch! Glad your butt is ok too!LOL

The shot was painful but very beneficial. I am going to research to find out best IBS diet-my problem is that I can't eat so many foods-wheat, milk, raw veggies and fruit-I laughed at the sheet doc gave me for diverticulosis. I will look at the South beach diet .
Hope you are ok Joanne. I was so happy to get up and have a nice cup of coffee today. Eventually i will go back to bed-we have this wacky routine of getting up early and laying down again.
There is a nice Nativity scene at Walmart with lights-I want it to go on sale. It probably will.
I think Christmas will get our minds off of what's going on. We are so fortunate that our 4 kids have not been affected so far-except that their 401 K's are way down -but they are young. Mike says that even his baseball card and computer business are ok. And we have Social Security and my pension.
Bye for now-Mima

Good morning to the other early risers! (Candice and Mima) I'm killing a little time before I walk her royal highness in 40 degree weather.....brrrr. At least that is cold for us Florida folks! FM is brutal this morning....even after taking the meds. Hope the walk loosens things up. Hubby got home at 5 am from work and is off to bed for a few hours. Stay warm folks. Will check back later.

Kate, I make the same things over and over. I rarely try new recipes, but maybe it's time that I start. In fact, I really haven't done much real cooking in ages.

Julie, I started doing Yoga at the Y a few weeks ago. It has really improved my flexibility and balance. I know I need to stick with it. I'm getting ready to leave for my aerobics class right now that meets 3 mornings a week. It sure was tempting to stay in bed. It's 23 degrees out there!

Candice, good for you on getting some good buys!! That always is a good feeling.


Kaplods, you'll have to keep us posted on the RVing!!

Mima, good news about the polyps! Tim and I leave for GA on Dec. 22. We'll head back north on Jan. 2 I think. We're taking Maurice with us, so that should be interesting!!!!

Hello to everyone else!!

Thanks Tammy, I will. It's going to take months just to sort through our stuff to sell/donate/store in preparation. I bullied hubby to take me on errands with him yesterday (it was very cold and damp, the kind of weather I really should know better than to go out in, but I was bored stiff from having more bad days than good - and just needed to get out of the house). Of course, I ended up very irritable and unpleasant. Hubby's "I told you so," wasn't well received (though he did try to be nice about it).

I'm just so tired of the fibro symptoms keeping me from doing things. Sometimes I just get so mad about it, I force myself to do what I want to do, and consequences be damned. Yes, I ended up in bed with the electric blanket, but what's the alternative - hibernate until spring? (If I could find a way to do that, maybe I'd consider it - but staying in bed watching tv, just doesn't cut it).

Maybe it's just pure fantasy to think that seeking warm, dry (but not too hot) climates will dramatically improve my function, or at least my attitude, but part of me says if I'm going to have just as few good days in a warm climate - at least I'll be in a warm climate on those good days. Nothing is worse for me in the winter than having a good day and being afraid to go outside for fear it will turn into a bad day. Of course, the claustrophobia I feel during a flare in a two bedroom apartment isn't going to be any better in a 30 foot trailer, but I'm not sure it would be that much worse, either.

Well Kaplods, sounds like you need to head to the southwest when you start RVing. Great warmth and dry air there! Are you and your husband making this permanent housing on wheels or are you just spending a few months on the road? Sounds like you are emptying a house and not returning to it? Some friends from up north are here in Florida now with their 5th wheel(?). It's roomy inside with most of the amenities but they store it here after March and return to their home up north for the summer. They travel from Vero to Key West for the next 4 months staying at camp grounds near/on the water. They make reservations year to year so they have it all planned out. Not sure if that would appeal to me. I understand it is a life all in itself. Florida is way too humid for my liking but being from coastal New England, I'm used to it. The summers here can be trying though. Wish we could find the perfect climate somewhere that offered fabulous income potential and great neighborhoods! I know, dream on....
Tammy, I made a great dish last night (but not something my husband will eat). Mediterranean Cod fish. It's a SB recipe I modified and it came out great. It's an orange & olive accented tomato sauce over fish with sauteed onions, garlic and oregano. If anyone's interested I'll post the recipe. It calls for a firm fleshed fish such as haddock, cod, halibut. Having my husband work nights does allow me to indulge in my favorite foods without extra cooking. I'll serve him something he likes from the night before. I'm having guests for T-Giving so I'm working on a suitable SB menu for that. I will indulge in mashed potatoes (1/2 cup!!) that day but need to find a way to lighten up the gravy and sweet potato casserole.
Enjoy the day, folks. Need to get something accomplished around here. Kate

Wow, has this thread ever gotten busy. Great stuff.

I just have a few minutes as I am heading off to work and I still have to go make some oatmeal.

My pals, FM and OA, go with me everywhere. I rarely stay home for them. Even those days, when my body doesn't want to move, I make it go and do something. The fatigue, however, is a whole other issue. It does stop me in my tracks as I wouldn't even consider driving my care, and it is just too much effort to put one foot in front of the other. Over the years, the FM and the OA have gotten better. I have a wonderful chiropractor who does Upper Cervical Chiropratic and never does manual manipulations. That was when I started to get better. Actually for me, the OA had me disabled for 10 years, and at the start of that time, my pal FM arrived. It hit me in the sternum area and it was difficult to walk because I couldn't seem to get enough air.

Anyway, enough. I will pop back after I get home. Have a good day ladies.

Hey There
 

Hello Everybody - For the hubby who said that having a colonoscopy was a "piece of cake",I wish he had taken my place for the past 2 days.. I have had 4 of them and this was the worst..NIGHTMARE!!!!!I have a ulcer along with some other things.The golden years are RUSTY. They will check my gallbladder in a couple weeks..
I don't want to think of Christmas right now.. It will be a slim Christmas I feel sure..
Back later.. Joanne

Joanne, that was my hubby and I am so sorry you had a hard time with yours. Don't they knock you out with that "twighlight" anesthesia? My husband said he didn't know a thing after they knocked him out. Everyone I know who has had their colonoscopy (except me , of course) has said the same thing and that the worst part of the whole procedure was the fasting and the prep. I feel bad that you had a terrible time and hope your gallbladder test goes more smoothly. I may be taking that date off my spring calander now!;) I do hope you feel better soon.
Anne, what does your chiro use besides manual manipulations? I don't understand upper cervical chiropractic I know it is the neck and base of skull but does he use an activator or something? Would like to know about this method as my DC still does the old "snap, crackle and pop" thing....not as brutal as some I have gone to but still a manual adjustment. Time for the Queen to have her afternoon walk....hubby just got up and he has 2 days off so we need to get some "manly" chores around the house done. Have a great weekend all.

Hi Kate. I was disabled for 6 years before going to him, and after I started with him, I just got better and better. I am now able to work, casual 2-3 days a week, doing drug screens. I feel so much better when I can be busy. It took me 10 years before I was able to get going again, but I am now going :lol:

www.Nucca.0rg is the website, but it says it is currently under construction. This is done by exact measurement. I think, in the USA, the ATLAS treatment is much the same. We don't have anybody who does that, but I know of people who had that treatment and it helped their FM.

Joanne and Mima - glad that it is all over for you.

I am tired, as I just got home from work, and I needed to sit down for a few minutes. Time to start dinner.

Kate - We're looking to make it permanent, at least in the "until further notice," sense. We don't own, so that makes it easier. Converting a small
two bedroom apartment into a smaller one bedroom apartment on wheels isn't that large a stretch. We're looking to buy a recent model, but used, so it retains as much resale value as possible, so we'll be ready to move into permanent housing again whenever we feel like it. If this ends up being a six month, six year or thirty year adventure, we're prepard for it.

Kaplod-you don't have to stay in the camper-the nice thing about FL and other places is the abundant sunshine and warmth.
I am glad you are over that-it's not the colnoscopy-you go into lala land and then it's over/ it's the prep. Yesterday my body thought it was still prepping and I had to take 3 Immodium so we could go out.
I think it helps to be involved with something. I went to Art class with my limpy foot and sat next to a lady who had her leg amputated. There were 3 other people with canes and Marlene has heart failure that they can't do anything about. It puts things into perspective. I believe God will give me another body after I die and I will eat lots of icecream with nuts on top. Don't want to get too preachy but I am not staying here forever.
Got great shopping done last night-Dick's Sporting Goods had 25 dollars off a 100 and I got really nice stuff for my grab name=my dil. She's into kickboxing and running so I got her $12 socks and an outfit etc. And she can return anything she doesn;t want.
Gotta go to walmart today. Going to get Evan Wii Music, And get the car serviced.
Bye for now Mima

Good morning all....and wish I could just bail into a motorhome myself and head off into the sunset. This economy is making me nuts and by the time I get to retirement age, there probably won't be anything left in the social security system to collect! Just had a "tune-up" with our finances and sure does bring on the reality check! If we could stand the cold weather again we'd consider Canada......always loved the wilderness part of it but not the 11 month winters:) Kaplods, I hope you enjoy whatever time you spend in your moving home and that you get to see some beautiful places in the U.S. Are you bringing a laptop and wireless connection??
Anne, I will check out that sight and hopefully get a better idea about this ATLAS thing...never heard of it.
Mima, I felt the same way when I worked for Hospice for awhile as a CNA. Definitely keeps you grounded when you are around people who have nothing to lose, so to speak. That was one of my favorite jobs though. I might even think about doing it again here in Florida. As for the new body....I am an "old soul" and I don't think I'll be coming back again unless something really exciting happens to make me want to go through yet another life......Off to do my T-Giving food shopping to get all the good sales. Enjoy the day folks. Kate

Hey There
 

Mima- You got that right. IT'S the prep. I too had to take immodium to get it stopped the day after..I am still not feeling good.. When I can't control my life ,I don't like it.
Kate I was a nurse for over 30 years when one day I said ENOUGH.. Although I retained all that I learned I wanted no more of it..Burn out.
Over the years I watched and helped so many die that I became numb to it.. That is not how life is supposed to be.. Now my G/daughter is a RN and I pray she doesn't get into a area where there is only the end.
Kaplods West Fl. is not as busy as East Fl. There are a lot of retirees over here..
Hello Happy, Meme, Candice.
Have a good weekend everybody
Joanne