Fibromyalgia, OA...anyone else have it, besides me?

[COLLEEN S]

Hi everyone, I have just had a really hard week of it, and decided to post. I have 2 OHS for BVD and aneurysm; fibromyalgia; osteoarthritis (OA); hard of hearing; migraines, depression, a new pain in my left side, pains in my limbs, legs, arms, location changes all the time. It gets to be very depressing. I am trying so hard to get thru this. Monday had the Cardio, Tuesday had appt with a surgeon for abdominal pain; Wednesday had the CT SCAN with wonderful (not) banana smoothie and IV contrast; came home from that and just slept till I had to go into work at 6pm.
Thursday, thankfully, all I had going on was work that night. My left thigh, in the back has been hurting like a toothache; i go back to the surg. on Mon to see what is going on with my abdomen.
I need something stronger than Tylenol, but my health plan won't cover Lyrica...I just filled out disability paperwork last week, I tried for it before and was turned down, I had a judge who said I could be a security guard (a sec. guard who can't hear?). Maybe in MD it will be better...I lived in VA then, and was younger. Sorry about the venting...I just hate this pain.

 

[geebee]

Hi Colleen,

I was diagnosed with fibro about 6 years ago. Had pain for a couple of years prior to that but didn't know what it was. Apparently major surgery can trigger fibro so I not surprised to hear about your issues.

It can get tough sometimes. I cannot take Lyrica (bad side effects) so I am a Tylenol addict and also take Percocet if I get a really bad flair up. People with fibro often have Restless Leg Syndrome which can make the pain worse.

I also use Therma-Care wraps a lot. It really helps make the pain easier. I also make sure my legs are always covered. If they are not, I get a lot more pain. Same with back and shoulders. Even in hot weather, I am bundled up. There are some great, silky like long underwear pieces made by Cuddle Duds that work really well at keeping muscles warm.

Venting is good - it helps to reach out and know you are not alone.

 

[Ross]

I haven't been diagnosed with it, but I'm really starting to wonder.

 

[COLLEEN S]

I've had it since 1990, the fibro, and the OA since 92 or so. Oh the pain.

 

[Harrybaby666]

I have Both Fibromyalgia and Osteoarthritis as well Colleen...

I have Both Fibromyalgia and Osteoarthritis as well Colleen...

There are some nights that I cannot sleep with any covers on because it hurts too much and most days, if I am not going out anywhere, I wear shorts and a tee shirt as they are the lightest possible thing I can find and again, it helps with dealing with the pain. As for the osteoarthritis, I REALLLY feel it when there are changes in the temperature, as the case has been over the past few days here in NH. With the temps being higher and the humidity really being bad...OH LORDY has the pain ever been bad. I know how your feeling hon, and please know that most likely, when you are in pain, I am also in pain right along with you....Extremely gentle hugs from ole harrybaby

 

[netmiff]

my MIL was diagnosed with fibromyalgia about 25, maybe 30 years ago. She had a whole bunch of other problems in her last two years of life, mostly stemming from a liver problem.

 

[terryj]

I was diagnosed with Fibro after a car wreck 25 years ago. Somedays I feel fine and somedays it hurts to blink my eyes. I can't take anything to help me sleep except on the weekends because I have to get up at 5 and leave for work by 6. I have tried several different sleeping pills and they all leave me feeling groggy the next morning.

 

[COLLEEN S]

Sue,
My husband has that problem with sleeping. He finally found a combo that helps him...a trazodone pill and a requip, low doses. He sees a neurologist for this. He's been thru every sleep study in the book and was on cpap for a while. None of that helped.

 

[COLLEEN S]

Harrybaby,
Thanks for posting this. Wow, who wooda thunk it. We both have fibro and osteo and heart valves. Fibro, Osteo, Heart valves-OH NO! Sorry, was remembering the "lions tigers and bears" line from Wizard of Oz. Anyway, wow. My OA is worse with change of weather and getting up after sitting a while. Covers dont bother me. So do you just live on meds? I'm now on Lyrica ($50 copay) which seems to help a bit. I look for my darvocet when it doesnt. You?

 

[BDMc]

Colleen, Hope you are feeling well and had a Happy Birthday. Your valve bro, Brian

 

[lovejoy]

I too have fibro, no osteoarthritis, but severe osteoporosis, which has caused fractures, back pain and hip pain. Also have COPD, gout, high blood pressure, depression and a host of other issues. I am allregic to most all pain meds, but can take morphine and always have it onhand. When pain is really bad, I take it, but not at night, causes insomnia for me. Sleep is something for me that is very elusive. Hurt to bad to sleep. I do sympathize with you, I feel your pain ! And weather changes, oh my, sure set the metal plate in my hip off !
I finally rec'd my SS disability. They went off pain and depression. PM if you need help with your app for ss.

 

[Taysgrama]

Wow Colleen - I have been thinking that I may have Fibro as well....Haven't been diagnosed with it yet, but do know I have OA and restless leg syndrome....my PCP finally started me on a med for the RLS and that has helped my sleep a little more than nothing! When I see her next week, I will be asking her about Fibro, since the pain in my hips, legs, back and chest are getting worse, not better!! I take tramadol everyday for the pain in my body and sometimes have to take vicodin when the tram does not work....I seem to have more pain when we are getting rain or snow.....heat feels great, but can't always have that here in Ohio! Our weather here can't decide if it wants to be warm, cool or COLD!!!

Good luck with your SS disability. I applied for it in April, 2009 and am still waiting. The worker called me this morning for more information about when I stopped working full time and then when I stopped working part time, so we shall see what happens. I have seen the government doc for depression and breathing tests in the last 2 months.

 

[Lily]

A possible connection to high fructose corn syrup?

A possible connection to high fructose corn syrup?

.
I meant to reply to this when I saw it last week but forgot.

Try websearching fibromyalgia with "high fructose corn syrup" and you may find a way to reduce at least some of your pain. (edit - A relative of mine, who has been diagnosed with fibromyalgia, told me about the possible connection.)

I believe I have recently found a connection to some various pains I sometimes have and high fructose corn syrup. It is in so many foods. One article I read said to skip the food if HFCS is found within the first five ingredients. And the chemical that is HFCS can have slightly different names also.

If you have pain, I think it's worth looking into. Apparently, particularly those with fibromyalgia may be susceptible to HFCS-induced pain; if you can believe the articles.

Hope this helps someone here. Take care .

 

[SHerrin Hutt]

Rls

Rls

I feel your pain .I have almost the same problems you have. I fight with pain every day. RLS,Fibro.I can sleep through the night and it brother me during the day.Last week my pacemaker went twice and I will go in the hosp. friday for abulation to the top back of my heart.I am so scared! I have learnrd so about on line. The two jolts last week was enough to scare anyone to death.I will a first time grandmother in 11 wks.to Olivia Mae.It took me 3 yrs. to get ss disablity. The school system I worked for did all the work for me. But it was a real pain in the butt. Good luck with effort.

 

[Kathy McCain]

Hi Colleen,

My 34 yr old daugther has fibromyalsia (hope I'm spelling correctly). I am beginning to wonder if maybe she didn't inherit it from me! I have had random aches and pains before surgery, but they seem to be more frequent, and getting a bit more intense, since my surgery! My heart is doing good, no valve problems so far. Dr. says I'm healthy, but this is beginning to concern me. The aches and pains I get on occasion in the chest or sternum area, are not something my cardio is concerned with. I do have osteoporosis, which I'm taking Boniva for. I just don't get it! The pain can really strike anywhere. There is no medical reason for these pains! It's extremely frustrating! Maybe it's just getting older?? Oh, years ago my GP said it might be neuralgia.

Hope you find some answers Colleen, and start feeling better!

Good luck keep us updated please.

 

[COLLEEN S]

Kathy, thanks for the reply, Sorry it took so long for me to get back. Alot of issues going on at home with hubby off for 2 months (furlough.) Anyway, Thanks for the well wishes! I appreciate that. The random aches you are experiencing are a hallmark of fibro (FMS). There is only currently, a test for tenderpoints to determine a diagnosis for FMS. An appt. with a knowlegeable (of FMS) gp, or with a rheumatologist should give you some answers. Good luck with your situation. Remember, you are your own BEST advocate!

 

[Magic8Ball]

Wow, i haven't been online for ages and just popped in to see how everyone was and saw this post.....I've had about 12 months of pain in my left side and didn't know what it was...about 3 weeks ago i lost patience with doctors and googled all my symptoms and self diagnosed fibromyalgia.

I haven't been to the doc's yet for a confirmation.

I'm not severe in any way but when i wake in the morning i feel like ive been run over by a truck, left side pain mostly..takes me ages to 'warm up' but its always lingering...

I was actually unable to play in a father and son soccer match not because of my heart but because i could not even lightly jog as it felt like i had a golf ball wedged between my lower ribs.....

Some of the symptoms i matched (to varying degrees were...)

Pain in the back of the neck and shoulders
pain when i sneeze or cough
foggy memory from time to time
weight gain
muscle twitches and weakness
lethargy
cravings for carbohydrates and chocolate
bloating
urinary frequency
difficulty speaking known words
tingling in the hands/lower arms
trouble concentrating
staring into space before brain kicks in
sensitivity to noise
night driving difficulty
Depression (my wife thinks im depressed but i think im fine)
unaccountable irritability

Is this common amoungst us lot?

Overall i'm just knackered, short tempered and negative (no its not just male ) and i have no enthusiasm for anything....the morning pain and tiredness just sap me completely.

Its improved with daily posture improvements and sleeping on my back but hasn't gone away.

At one time i thought it was my meds and systematically stoped taking them in rotation but it didn't make a difference....i regularly see a chiro for my back but she couldn't find anything wrong with me either....

Is it true this is a learn to live with it type of condition.....it makes me feel 70 rather than 40....

 

[catwoman]

Magic8Ball:

Sorry you have these symptoms. My youngest sister has fibro, in addition to lupus & rheumatoid arthritis.

Do others in your family have the same symptoms? Just curious, since fibromyalgia typically affects more women than men (9:1, according to wikipedia; no stats at Cleveland or Mayo websites, but those also say more women than men are affected).
One thing I noticed is mention that it can run in families, with polygenes suspected. Polygenes means that it's not just one gene responsible, but multiple genes working together that produce the symptoms.

You mention having gone to doctors. Have you seen a rheumatologist?

 

[COLLEEN S]

Oh yes, these are common!

Oh yes, these are common!

Magic,
Yes these are common symptoms! All but the night driving one I think. It seems you are describing me when you use these words. Even without a rheumy (read expense) diagnosis, if you have the tenderpoints, you have fibro. http://www.fibro-myalgia.com/tenderpoints.html There is a link to the tenderpoints. And yes, I feel like I'm 70 most days. I'm 47. If you ever wanna chat, any of you, my chat on aol is lotsofheart74782.

Wow, i haven't been online for ages and just popped in to see how everyone was and saw this post.....I've had about 12 months of pain in my left side and didn't know what it was...about 3 weeks ago i lost patience with doctors and googled all my symptoms and self diagnosed fibromyalgia.

I haven't been to the doc's yet for a confirmation.

I'm not severe in any way but when i wake in the morning i feel like ive been run over by a truck, left side pain mostly..takes me ages to 'warm up' but its always lingering...

I was actually unable to play in a father and son soccer match not because of my heart but because i could not even lightly jog as it felt like i had a golf ball wedged between my lower ribs.....

Some of the symptoms i matched (to varying degrees were...)

Pain in the back of the neck and shoulders
pain when i sneeze or cough
foggy memory from time to time
weight gain
muscle twitches and weakness
lethargy
cravings for carbohydrates and chocolate
bloating
urinary frequency
difficulty speaking known words
tingling in the hands/lower arms
trouble concentrating
staring into space before brain kicks in
sensitivity to noise
night driving difficulty
Depression (my wife thinks im depressed but i think im fine)
unaccountable irritability

Is this common amoungst us lot?

Overall i'm just knackered, short tempered and negative (no its not just male ) and i have no enthusiasm for anything....the morning pain and tiredness just sap me completely.

Its improved with daily posture improvements and sleeping on my back but hasn't gone away.

At one time i thought it was my meds and systematically stoped taking them in rotation but it didn't make a difference....i regularly see a chiro for my back but she couldn't find anything wrong with me either....

Is it true this is a learn to live with it type of condition.....it makes me feel 70 rather than 40....

 

[Magic8Ball]

Magic8Ball:

Sorry you have these symptoms. My youngest sister has fibro, in addition to lupus & rheumatoid arthritis.

Do others in your family have the same symptoms? Just curious, since fibromyalgia typically affects more women than men (9:1, according to wikipedia; no stats at Cleveland or Mayo websites, but those also say more women than men are affected).
One thing I noticed is mention that it can run in families, with polygenes suspected. Polygenes means that it's not just one gene responsible, but multiple genes working together that produce the symptoms.

You mention having gone to doctors. Have you seen a rheumatologist?

No, haven't gone to the doctors since the light went on and i joined the dots to find this diagnosis.

I'd say i'm very mild....but hey what would i know really....

I have the pain in the lower left rib, have it now as i type....but waking up if i've slept on my side is very difficult to get up.

Other than that my main concern is the fatigue and the 'can't be bothered' attitude combined with the concentration issue.....

As for the tender points, yes and no, the ones on the back yes to varying degrees...mostly the back of the neck during the day and the lower back/hips in the morning....

on the front no, knees a little but that could just be wear and tear....

Like i said, i think i'm a mild case but i guess i need to look into this further...we have a good company doctor so i'll start there...