Topic : Living with Chronic Pain

Welcome to the board...My name is Becky, and I am 47, married, with 3 boys, and very involved in Scouting.   I, too, have fibromyalgia, along with asthma, heart arrhythmia (long qt syndrome), breast cancer survivor, bipolar disorder, thyroid issues, narcolepsy, sleep apnea, migraines, IBS, high cholesterol, weight problem (due to the wacky thyroid levels), chronic fatigue, surgical menopause (hysterectomy with ovary removal), lactose intolerance, food sensitivities, and have had my gallbladder removed...plus, a 2006 cololoscopy revealed pre-cancerous colon polyps that would have been full-blown colon cancer if I had waited until age 50 for that colonoscopy...all disorders affect the others...people with a history of breast cancer are at much higher risk of having colon cancer...

I wish I had a doc who would look at my whole body, rather than focusing on one problem, with apparent "tunnel-vision"... I have a doc for each problem, but nobody overseeing the whole thing...my general doc refers out for everything, and she gets reports from the other docs, but she doesn't seem to want to deal with the problems that she has referred out...she is still the best doc I have ever had...she is dead right about whatever she is referring out for...my psych doc is actually the only one who seems to see the connection between the disorders...the thyroid disease is fallout from the hysterectomy with ovary removal...lack of estrogen, progesterone and testosterone...the hysterectomy was because of the breast cancer, which was Estrogen Receptor positive...and I couldn't do the chemo (Tamoxifen) because of the heart arrhythmia...the messed up hormone levels affect the thyroid levels, calcium, vitamin D, and who knows what else.  Fluctuating female hormone levels greatly affect bipolar disorder (every visit to the psych ward was during the PMS phase), and thyroid levels also greatly affect it, as well as certain meds.

Been there, done that, with the docs who don't listen...I went through several who decided I was a hypochondriac because I was complaining of chronic pain and fatigue, but there were no lab or xray findings...therefore the pain "didn't exist"...

There is much info online about fibromyalgia...just watch out for the sites that are trying to sell "miracle cures"...there are none...Lyrica is the latest thing for treating fibromyalgia...but I don't like the looks of the potential side effects...and I am already on 12 different prescriptions...dont' need another one...

I have to go with the "home remedies" for the fibromyalgia...I don't get along with narcotics...they greatly affect my bipolar disorder...too much of a rollercoaster...and prednisone for my asthma is only prescribed when it is severe...it makes me manic...NSAIDs don't mix well with the Lamictal that I take for bipolar disorder...I use heat packs, (microwavable barley pack), Tiger Balm, stretching exercises, (I get really sore from sitting still too much), Excedrin, prescription Flexoril,metamucil (for the IBS), and when the pain gets out of hand, I go to the chiropractor...he is a true "miracle worker"...he has helped much more than any other doctor I've visited for the pain!!  I get a lot of intestinal cramping...often due to not drinking enough water, and drinking too much coffee...

With Fibromyalgia, sleep disorders are very common...I would highly recommend that anybody with Fibromyalgia, or the related Chronic Fatigue Syndrome, see a sleep specialist, and get a sleep study...bad sleeps makes for MORE pain...There are over 200 different types of sleep disorders...I have Narcolepsy, AND Sleep Apnea.  I take Provigil for the Narcolepsy, and I have a CPAP machine for the Sleep Apnea.  Since getting the CPAP machine, my asthma has improved greatly...it gives me moist air to breathe at night, and the positive airway pressure seems to keep the airways open more...my pain has improved since getting the CPAP, but it is still present...especially when I over-do it on my good days...I really pay for over-doing it...

If your doctor hasn't already done it, you should ask him about having a COMPLETE blood work-up...my doc runs the tests at least once a year...I have recently had my thyroid removed because of nodules...my doc orders cholesterol, liver function, hemoglobin A1-C (long term glucose levels), immediate fasting blood sugar levels, thyroid screen, alkaline phosphatase, vitamin levels, sedamentation rate, and I forget what else...I also have 2X per year mammograms and once a year breast MRIs (follow-up for breast cancer), have had a bone density test, and a bone scan, sinus CT (chronic sinus problems), allergy testing...last year, I broke both of my feet just from tripping over something...I was able to walk on them, so I didn't even see a doc for it until 4 weeks later!!

Ladies, please have your yearly mammograms!!  And do your self breast exams...it was a self exam that revealed my breast cancer...the August 2005 mammogram was negative...then 6 months later, I had a tumor that measured 4.5 cm !!!!!...pretty large...that was DCIS...plus, there was infiltrative cancer as well...the lump became red and sore, so I thank God for pain, in that case...it saved my life...the cancer was all removed with the mastectomy in April 2006...and I have had reconstructive surgeries. 

SO...back to you...what symptoms are you having, and what is your doc doing about them?  Have you had any other testing yet?  As mentioned above, a complete work-up would not be at all unreasonable.  What tests did your doc use in diagnosing fibromyalgia?  For me, the diffinative test was the "pressure point test"...there are 18 or more pressure points all over the body, that are extremely tender for those with fibromyalgia...how old are your kids, and what gender?

Like others have mentioned, I too bruise just from a touch...It even hurts when the cats (love my kitties) walk on my legs or arms...or any place else on my body...I have bruises that I don't even remember how they got there...Once, when my husband (John) helped me up from the floor, he left a hand-print bruise on my arm...just from normal squeezing pressure when helping me up...I have to wonder what others thought about that!!

I've been to the doc for chest pain...it was diagnosed as "chest wall pain", and not much can be done about it, except to let it take its course and go away.

I think I've written a "book" here...I do tend to be somewhat of a "board hog" sometimes...get me going on a subject, and I'll keep rattling on...and on...(sorry)...

I hope my info has been helpful...I see that others have also posted a lot of useful info on fibromyalgia...there are many of us here on the board with it...myself...Sims, Jen, Becca, and many others...stick around...we are here to support each other, chat about pain and pain relief...and just banter about the happenings in our lives...good or bad...funny or sad...sometimes telling a good joke once in awhile, or sharing pictures of our art, pets, and anything else people feel like sharing...the off-subject talk is a good distraction from the pain...we have to life our lives in spite of the pain and fatigue...we just have to learn to adjust, and find what helps (and what doesn't)...

Good sleep, exercise, and stress control...probably a common thread for all of us...there are many kinds of pain addressed here...some more severe than others, but all valid pains...

like prof says "PAIN IS PAIN...your pain is not my pain...my pain is not your pain...but that doesn't diminish you own pain"...wait until you meet prof!!  She had shoulder surgery yesterday for an infected shoulder...they removed the prosthetic shoulder joint, and were going to scrape out the infection...she may need additional surgeries to remove more infected tissue...she has multiple pain and degenerative disorders, and she has a wealth of information, and she has some comical cats...she will be in the hospital anywhere from 3 days to 6 weeks, depending on what they found during the surgery, and how well she heals...if she is in the hospital long-term, I hope they will provide a computer with internet, so she can keep in touch...Prof...if you're out there, we're all thinking of you...

OK...the book has become a novel...I should go now...again, welocme...and stick around...you'll like it here...Becky

So good to "talk" to you this morning. I miss you on the weekends. But I also have to "smile" when thinking back to our weekends with the boys.. WOWZA.. it was mock 10 and always something going on and them more... ha ha ha....

I'm telling you.. what is the odds that two of us have "lost" a Mother In-law and then have Debbie dealing with the "same" road that we just drove on????

Then, John hurts his knee and it the meniscus and ??? and then Morgan breaks her leg.. I have knee surgery and we think it the meniscus, but ends up being more damage under the knee cap.. It's just crazy..

Oh, the swelling, I am so feeling for John. I still do not have a knee cap on the right leg.. the swelling is going down... but it's still there...

And there was a day that I had a hard time pulling my jeans off.. the knee was so swollen, that the jeans had a hard time going over the knee......

Thanks for the Wind.. they say 18 mph right now, but sounds like 100... the temp is down also, we're sitting at 73 and it's 11:45..... I knew I had to water last night, due to the wind today....

The ponds sound so cool. Can't wait to see pictures of the new one.. Also, a lot of work. But, for those who love the outside, it's not work....

And, Mom and I were just talking about those who have the love for their yard, the house seems to get put on the back burner in the summer...

So, don't freak out too much about the house.. Soon enough, it's going to be a long cold winter and you will be Stuck inside and will feel like dealing with the piles... But right now.. enjoy what time you have left in the yard..........

Yahoo for the Culinary Kid.. Wow, sounded like a wonderful meal to me... And you are so right.. he's "learning"....

Oh, let me tell you, you are not alone in the "low energy department".. And I am so glad to know I am not alone in this battle....

There are a few high energy days and more low days.... ugggg....

And on the days I work.. once I get home.. it' takes everything I have to just get a meal done and that's about all I can give.....

Okay.. need to grab some breakfast and meds and keep reading the post......

Happy Tue to you.....

HUG HUG HUG..... Love Dianah

I have three boys...and I grew up with 7 older brothers...so bugs, spiders, and snakes are fascinating to me...I just don't like the ones that bite...my boys like to over-turn the rocks in our yard and find the pill bugs, ants, centipedes, and whatever else they find.  Once, one of our boys kept a fuzzy black spider as a pet...this particular spider has a pretty nasty bite...we bought him crickets to eat...he was part of an "eco-system" science project...he lived for quite some time...usually, we squish the black fuzzy ones...they hang out by the front door, and like to get inside...the dog ate one of them once, and his face swelled up huge...had to take him to the vet!!  The spider must have bitten his mouth before being eaten...

Slimy worms are pretty neat...especially the night crawlers...we find them while gardening...slugs are OK, as long as they are not eating the flowers...In the woods, there are some pretty big slugs...pretty interesting to watch...and when we went to Oregon, we saw banana slugs...big yellow ones...and we love frogs and toads...and lizards, newts, salamanders...etc...we can find them all around here...and we have some resident garter snakes living outside in our garden...they hang out by our fish ponds...

Garden spiders are pretty cool, as long as they don't get on me...mosquitos, ticks, and biting flies...I don't have much use for them...I guess they keep the birds fed...there are birds around here that fly low at dusk, catching and eating the bugs in the air...so glad for bug repellant!!

As for the fatigue that you mentioned...ask your doc about seeing a sleep specialist for a sleep study...sleep disorders are very common with fibromyalgia, and poor sleep causes more pain....I said this already in my previous post...there are many factors that go into relief of fatigue (some I haven't found yet!!)...I use a CPAP machine for sleep apnea, and I take Provigil for Narcolepsy...and I take Temazepam, so I can sleep at night...not only does lack of sleep, or poor sleep affect fibromyalgia, and other pain conditions, it also affects my bipolar disorder...in a bad way...

Since seeing the sleep specialist and getting the correct diagnosis for my sleep problems, and getting treatment, things have improved drastically.  I used to spend more than half the day sleeping...I just could NOT wake up...could not get moving...and I HAD to do that if I wanted to drive anywhere without falling asleep at the wheel...definitely NO long driving trips!!  (not with me driving)...I couldn't plan anything for the morning...all appointments and shopping had to be done in the afternoon...the Provigil and CPAP machine are the best things that ever happened for my fatigue (that and my husband's CPAP!)

Besides a sleep evaluation, there are some things that you can do to help you sleep...they call it "sleep hygiene"...

Go to bed at the same time every night, and get out of bed at the same time every morning...even on weekends...(it's true...when I sleep in, I am just MORE tired)...an erratic sleep schedule really messes up your body clock, and makes it harder to sleep, and harder to get up, harder to have any energy during the day...

I know that being a student, you are probably putting in a lot of late nights studying...what times do you go to school?  If you don't have to be there terribly early in the morning, it might be better to go to bed at a reasonable time, and do your homework in the morning...that's what our oldest son started doing...he is feeling much better for that...

NO TV in bed...when you go to bed, there shouldn't be any distractions...

Get ear plugs if your spouse snores too much (and ask him to get a sleep study too!...my husband has sleep apnea, with wall-shaking snoring, and his CPAP was the best thing that ever happened to me!!)...

If you have anything in your bedroom that emits light, cover it up, or get one of those sleep blindfolds.  Any amount of light, no matter how small, will penetrate your eyelids and make your body think that it should be awake.  If you have light outside your window, get better blinds or curtains that keep the light out.  Even that digital alarm clock puts out enough light to keep you awake...

If you take a sleep medication, be sure to go to bed ontime...if the sleep med is taken less than 8 hours before you have to get up, you'll have a harder time getting out of bed...been there, done that...

If you don't want a prescription sleep med, try Benadryl...that's what the sleep specialist has recommended for our kids...and it works!!  The chemical in Benadryl (diphenhydramine) is the same one that is in Unisom, and Tylenol PM...

If you take a daytime nap, limit it to 20 minutes...set an alarm...and don't take any evening naps...actually, the doc says that a power nap after lunch is a good thing...

Be sure to treat your pain before trying to sleep...I absoutly CAN'T sleep when I have a migraine headache, or severe back or muscle pain...I take Excedrin for the migraines, and I take Flexoril along with Excedrin for the severe muscle and back pain...and neck pain...Tylenol alone doesn't do it for me...it seems that the combination of the Tylenol and Aspirin that is in Excedrin is a better match for me.

NO caffeine after 3:00 in the afternoon...it's amazing how much caffeine will affect sleep...although, there is caffeine in Excedrin...but apparently not enough to override the Temazepam...

Don't drink alcohol...period...

Don't drink large amounts of any beverage too close to bedtime...you don't want to have to get up in the middle of the night...

If you are unable to sleep, keep your clock covered up...you don't need the added stress of watching the minutes and hours tick by...my sleep doc says that you are probably getting more sleep than you think you are...

If you are unable to sleep, don't get up and watch TV or get on the computer...those things will actually keep you awake...or you will fall on the floor when you fall alseep in your computer chair...LOL  The light emitted from the TV or computer screen will make your body think it should be awake...

This advice came from my sleep specialist...and I try to follow it as much as I can...when I violate the sleep rules, I pay for it...big time!!

On to another subject...I LOVE to sing...mostly Christian songs...and I love to write Christian songs...I sing on our church's worship team, and I love to sing and play my guitar at home...I also play the trumpet...it is very good for my asthma to keep my lungs in shape...plus, I love to paint...I paint portraits of animals on rocks...my next project is my brother's cat...they are housing our oldest son while he is in culinary school...a huge burden off our minds...and we want to give them a thank you gift...there is nothing that we could give them that would express just how grateful we are...but a token that I hope they will like...

I HATE housework...and gardening seems to never end...I hate weeding because the weeds just keep coming back (kind of like laundry and housework)...

Well...I've really been a board hog today...gotta go...the kids are bickering again...

Everybody be well today...Becky

Oh Sims...

I can not tell you how "happy" I am to see YOU!

I know there are times it's hard to post, but you need to at least just say hi and I'm okay.. Just let us know you are around.. I get way worried when we  don't "see you".......

Too funny about last night, both of us on.. I did not see you.. sniff sniff sniff......

Woke up this morning late and my first thoughts were of Prof.. So hope that surgery went good and her way.. Also that she had no major problems... HOPE HOPE HOPE..... This infection has gone on way too long.. So, let's hope she's on some really good pain meds today and she just SLEEPS..............................

Sims, it sounds to me, like you are on the up-side of this major grieve you have been dealing with. I mean it.. You sound like you are over this major hump and that you are really ready for the next chapter in your life...

I am so very proud of YOU.. "yes, you are ready to enter though that next door"..

And I think this "down time" you have had, has only made you stronger in many ways.

Please tell me the name of this book by Dr Frits Winter... I would love to read this.....

To be honest with you, there are many times I wish I could "cry".. I think my antidepressants keep me from being able to just "break down and cut loose"...

It takes a lot for me to cry.. And it's usually when someone else is crying in-front of me, that makes me cry...

I know, it's crazy.....

But I think it's so health to be able to just let it out... And I'm not able to do this.... And I wish I could.....

I heard from Lashy again yesterday. She is home and she is resting a lot. She said she gets the kids up and ready for school and then after they are gone, she back in bed until they get home...

She said she is so ready to get back up and going, but right now, no energy...

But, she's Home and there is not better place to be than your own bed..

She wanted me to tell everyone HI and she will post soon.....

Sims.. has your Son started back to school yet?? Our kids here just started today...  How about Daughter?? Has school started for her yet????

My Hubby is just coming off of 4 night shifts. So today is the hard day.. he will only sleep around 3 hours and then up and I bet he's back in bed by 7 or 8 tonight....

Our yard needs mowed bad.. but we have high winds today.. So.. will see what the afternoon brings.

I really need to work on the house some today.. Yikes... ha ha ha.........

I just had breakfast with you.. Had fat fee vanilla yogurt and took my meds....

Sims.. if you need to "talk".. here's my e-mail address.... dharden@collinscom.net

You know me.. I can yak with the best of them... ha ha ha.....

I am so glad to See You and I am so so PROUD OF YOU ALSO.....

Sending you All my Love and HUGS..... Love Dianah

Ha, boy oh boy.. I'm all yak today.. started in the morning and here it is, now 12:30 P.M......

Oh well.. the wind is blowing and can't do anything outside....

So glad school is going good for you... And too funny about how small the world really is.. that your teacher now, knows your high school teacher....

I was going to do ribs out on the grill tonight, but now think I have to come up with plan B.. too windy to BBQ......

Oh, I love to cook on the grill......

Well, I guess I'm going to clean up the kitchen and living room and guess I will throw some cloths on also.. Still in my PJ"s......

HUG HUG HUG.... Love Dianah

 Hi Becky,

How are you today, still feeling sore? I hope not.

God, howlong must John still wait to get some treatment for his knee???? You do a wonderful job with the ice and heat but he does need a doctor, yes? I surely don't want to live in the US with that medical thing that is going on. But wish John much strenght from me and tell him to listen to his lady about not walking on that knee.

Congratulations on your sons passing in culinairy school. Le Cordon Bleu school, waw, if he is really good, he should go to France. Later yes but the French have excellent food. I live not so far from the French border and eat French every day. Just one thing and i (we Belgians are proud of it), You know, you all say French fries* but in fact the original place where they were made is Belgium,did you know that. It's true. It should of been Belgian fries* but some chef called them French. Not many people know this but is really true. And Cordon Blue is a meat-dish, dilicious*, we eat it with sweet patatoes and tomatoes a lot. It is porc slices opened in the middle with a special cheese inside, closed up again and turned in 'chapelure'. You bake them and the cheese melts, very yummy yummy. Thinking of it, the water comes in my mouth.

I have been reading your post about the sleeping habbit. There are some good hints in it that i will try, thank you. Only just a few questions, when do you go to bed and get up, even in the WEds? It is to have an idea what you mean, not too late, 10,11,0.00PM? Up when? 6,7,8.00 AM? Me is sleep when i can, day or night and i know now that it must change that bad habbit. The 20 minute i know but it does not work with me. I think all the time, still 15 minutes, still 10 minutes and then i panic. Any advice?

Another thing i have want to ask you about but did not dare is, how did you know when you had Bipolar Syndrome? Can you discribe how you are, Becky, please?

Why? Well, sometimes i am very manic and then in a couple of hours it can turn to the wurse. I love to be manic, those moments don't stay long but it gets me going, if you know what you mean. I don't dare ask my doc, afraid he would laugh with me. Can you tell me how it is to live with Bipolar without meds, i mean, how was it for you when you were not yet diagnosed with the disease.? How did the doc came to the conclusion?

I red that you said 'garter snakes' (pluriel), there was just one before or did he find a friend?

Good luck on the work on the rocks to keep the water from getting inside them.... hard work. I do hope it will work.

Love, sims

Hi lady purple hat,

Just like you, sweet lady, my mind was all day about Prof. I saw a nice post last night when i logged out from another person a long time ago. I will post it later, you will remember it. I hope that what is in that post may be so true for Prof, the poor thing. May she indeed have a lot of sleep and feel as comfortable as possible. All we can do is hope and pray.

You are so right about the losses here on the board. You, Becky, Debbie, Morgan, Prof. August 2008 is a hard one for everybody here.

I am sorry, i don't post so i-regalar* but when i feel so down, i feel so guilty to post with just my problems then here on the board. It feels like i would put everybody down with me and i don't want to do that. That is why. But i will send you an e-mail then, ok. Thank you for your address.

About your hubby, you miss him, don't you, when he is gone? I think you are like me on that. My hubby is on guard, his last night. It is 4.40AM now for me and can't sleep again. I miss him too.

But still some really good news, tomorrow, wednes day he is on holiday. 2 weeks and a half, till 15 september. I am so happy. No calls from the hospital, no working overtime, no stress, just wonderful.

And he needs it, he is so tired for the moment.

Dianah, thank you for being proud of me, it means a lot to me.

I am not over it yet but i need some magor things to change and rapidly. I never understood the real meaning about 'no pain, no gain'. I was being lived by the pain, so after the other door, there must be a way  to lears to live with the pain. Am i getting the point now?

Love you Di, sims

Ps You wrote :" I can yak with the best of them... hahaha..." ..... What does that sentence mean. Don't understand not a word from it. What is yak? The best of them? Who?

And what does it mean, the word needy?

Big kisses, me

John wants the computer, so I'll have to be quick...

Yes, we now have multiple garter snakes...the snake had babies, and now we have little ones, as well as the bigger one.

I'll post tomorrow morning about the bipolar disorder...it's a long story...I will say, however ,that if not for the meds, I wouldn't be here...

John's knee is feeling better today...not so much swelling...but he still needs to see an orthopedic doctor...we live in a small town, where there is a shortage of specialists.  When the general doctor makes a referral to a specialist, the specialist has to look over the file and decide if he will take the case...rediculous in my opinion...if the general doc says that he needs to be seen, then he needs to be seen!! 

I try to get to bed about 10:30, and I get up at 6:30 in the morning.  On weekends, we sleep in until 7:30...on weekdays, we set the alarm for 6:00 AM and hit the snooze bar for 1/2 hour.  On weekends, we set the alarm for 7:00 and hit the snooze bar  for 1/2 hour...the snooze alarm goes off every 9 minutes...we get up when we're supposed to on the weekends, unless one of us accidentally turns off the alarm instead of hitting the snooze bar...the off button is right next to the snooze bar!!

For the power naps, I actually set the alarm for 1 hour...it takes me awhile to fall asleep during the day, so 20 minutes ticks by too fast...I'm like you...I keep watching the clock...and if I can't see the clock, I will doze and then wake with a start and wonder how long I still have...but if I don't set an alarm, I'd sleep all day!!

Well, I'd better go...I'll let John have the computer for now...I'll be back in the morning...I'll go into detail about the bipolar disorder...in the mean time, check it out online...go to www.nami.org  It is a very good web site and has lots of good information about mental illness...

Becky

A burr Good Morning

It's 45 degree's this morning and just a little breeze blowing.

Mr Weather Man is calling for 70's next two days and then will jump up to 80's and then looks like we will be back down to the 70's again...

My crazy guys left the house at 4 this morning. They are heading up to set up their tree stands for hunting. They are CRAZY and will act this way until the end of Nov... ha ha ha...

Not feeling so good this morning, I am sure it's the 45 degree's that is effecting my poor old body..

Sims.. Yak means to "talk".. I know, sounds funny..

Sure hope Prof is hanging in there. I think today will be the hard day for her.. So fingers and toes crossed she just can sleep as much as she can.

Sending you a big hug for today HUG HUG HUG......

Becky.  So glad Johns swelling is going down. Yeah.... 

When do the kids start back to school?? Our  kids here, started back yesterday..

HUG HUG HUG.........

Here I sit, with one of my winter coats on.. how crazy is that, and I'm sure I'm looking good here..

A nice-hot-bath is going to take place soon and will see if that helps me feel better. Its like everything on my old body is hurting and almost have the chills....

Oh, Morgan is going to have surgery this Friday on her leg. Bless her heart.  They will use screws and a plate to fix her back up..

Sounds like she will be at a top-notch hospital, so that's great on her end...

Well, going to head to take a Bath and see if that will bring me back to the living this morning..

Hope today will be kind to all of us.. Love Dianah