General chatter - Fibromyalgia?




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mandagrl1
01-11-2011, 11:42 AM
Does anyone here have it or have a spouse with it? My husband was recently diagnosed with it and it's very, very hard on us. Emotionally, physically, all of it. Just stinks!:?:


Sum38
01-11-2011, 11:47 AM
I was diagnosed with lupus about a year ago.

It was a very difficult year for all of us.

But you will adapt :) ((HUG))

mandagrl1
01-11-2011, 12:30 PM
Thanks Sum! My husband has had unexplained pain, numbness, sleep issues, etc for years. He finally saw a rheumatoligist in the last few mos and that's the Dx for it. It's good to know what it is, but it seems to get worse more than it seems to get better with treatment. He barely sleeps, has ridiculous mood swings, still lots of pain/tingling, brain fog, etc. It's just very tough on us because I try to handle most things to keep him from overexerting, but then I get exhausted and it just cycles from there. *sigh*

He had a bad morning this morning. We have a 5 year old and he's getting down because he can't keep up with her. I'm trying to convince him to explain FM to her so she'll understand there's a reason why daddy doesn't feel good or up to playing sometimes.


ddc
01-11-2011, 12:46 PM
I was just diagnosed with degenerative disc disease and have some of the same symptoms you described. Pain all down my left arm, tingling, numbness of fingers, unable to sleep because of the pain. Mine is in my neck, but it can be anywhere in the spine and cause pain/tingling in other areas. Has he had any of that checked? Mine was found by MRI of my c-spine. When I was at my worst, I was extremely moody, grumpy, all I wanted to do was stay in bed. It sucked monkey balls. Painkillers, muscle relaxers didn't seem to help.

Has he been to a pain management doctor? Maybe they could help.
Best wishes to you. I hope he finds some relief.

mandagrl1
01-11-2011, 12:57 PM
Thanks for that ddc. I hate to hear about your pain! He hasn't tried pain management yet. Before we knew what it was, he self medicated with either alcohol or pain pills his coworkers gave him. I didn't know he was doing that and immediately squashed it when I found out (back then, I didn't know why he was doing it-I assumed it was recreational). So know, knowing that he had a problem with pain meds, he's hesitant to go to pain management yet. He's just started on a SNRI (Savella) that helps some, but it's still early days. He's also trying hot baths with epsom salts and on occasion when it's very bad-he takes a mild muscle relaxer.

kaplods
01-11-2011, 01:57 PM
I was diagnosed with fibro and other health issues (the most serious, an autoimmune disease attacking my joints, respiratory system, and skin) around 2003.

I had symptoms for decaded, but I coped (probably too long). My doctors tell me it's easier to stop the progression of fibro than it is to reverse it. If I had sought help more aggressively in the past, I probably would have been able to keep working, but I didn't really push doctors for a diagnosis until it was affecting my work performance severely.

My neurologist told me that doctors aren't sure whether fibro is caused by a sleep disorder, or whether fibro causes the sleep disorder, but up to 80% of fibro patients have a serious sleep disorder. My neurologist believes that the sleep disorder is the cause of fibro - because if you deprive people of sleep they develop the symptoms of fibro. If you deprive rats of sleep (and presumably people, which is why severe sleep deprivation studies in humans are considered unethical), the rats die of immune and autoimmune disease.

I was chronically sleep deprived since the age of 16. During my twenties and thirties, I worked swing shifts and tons of overtime (usually working two jobs or working and going to school). I didn't realize how important sleep was.

Getting pain under control, getting adequate sleep and eating relatively low-carb are my best strategies for symptom control.

I'd recommend trying to find a local support group. It really helps.

kateleestar
01-11-2011, 02:15 PM
My Mom had it, and my BFF has it. My mom also had lupus, RA, scleroderma, raynauds, diabetes, CHF and a bunch of other things.

I don't have it, but I get the 'trying to do as much for them' aspect. Remember, though, if you make yourself sick/tired, you will be no use to the kids or to your DH. :D

Sum38
01-11-2011, 02:29 PM
I think I have lived with lupus since I was 15 years old. Last winter was incredibly painful, and my husband dragged me to ER one morning, because it had been a week on torturous pain. ( And months and months of pain) I was diagnosed by accident. The young ER doctor's mom had lupus, and he instantly steered me to right tests.

The hardest part is. All these illnesses don't have a cure. Just need to treat the symptoms. Pain; pain meds. Inflamation; Prednisone (YUCK!).

I had million tests done last year, and I was also diagnosed with Celiac. Once I went of gluten products; my lupus symptoms started going away as well.

I don't know about fibro, but perhaps a diet change?

I added a few herbs to my daily routine as well. Red pepper, yes the hot kind, I take it in a capsule. It is good for circulation and inflammation. Probiotics, because Prednisone throws your flora completely off. Milk thisle to protect my liver from all meds. And I add curry powder to salad etc. because it is just supposed to be darn good for you :)

I spent my year on computer researching all options. It is a trial and error with treatments. He will be depressed and moody. It will be hard on your marriage. I won't lie about it. BUT, my personal experience; this whole thing, at the end, brought all of us closer together.

If you need someone to talk to, please send me PM any time!

mandagrl1
01-11-2011, 03:21 PM
Thank you ladies SO much for the compassion and shared experience! My mom and a good friend have it too. That's the thing with FM-it seems to affect each person differently. My poor BF has FM and Stage 4 Lyme Disease. :(

I don't know which was harder-wondering if he was making the pain up to get meds, or now knowing the pain is real and we're looking at dealing with it for the rest of our lives. It's tough to find a balance right now. When he's well, he my best friend in the world and DD thinks he hung the moon, but when it flares, it's like Jekkel and Hyde. I talked to him this morning and made him promise that when he's in pain or feeling a flare up; foggy head; bad mood etc that he'll just tell me in advance and make himself scarce and get some rest or some air to deal with it instead of trying to fight through and take it out on everyone around him. It only leaves us hurt and him feeling awful and guilty. I don't want him to feel like that. It just breaks my heart!

I did get him a suggested vitamin suppliment that was designed with ingredients helpful for people with FM. He just got and started it yesterday so I'm praying that will help him! He is a huge protien eater. He has carbs, but not too many. I have thought about researching a glueten free or at least reduced diet for it too. Crazy how many ailments are better for eating less or no glueten products!

emaline29
01-11-2011, 04:25 PM
Hi Manda, My daughter has fibromyalgia and also has rheumatoid arthritis so between the two she is in quite a lot of pain most of the time. I have ankylosing spondolitis which is a very similar condition and am in a lot of pain as well. Unfortunatley, as has already been said, there is no cure but avoiding as much stress as possible is likely to help in stopping the progression and easing some of the pain as well.

I wish you all the best for the future.

kaplods
01-11-2011, 04:51 PM
I talked to him this morning and made him promise that when he's in pain or feeling a flare up; foggy head; bad mood etc that he'll just tell me in advance and make himself scarce and get some rest or some air to deal with it instead of trying to fight through and take it out on everyone around him.

This can be really difficult. My husband asks this of me a lot, and because he can do it, he doesn't understand why I can't. He has pain issues himself and is a bear when his pain isn't under control. When he's having a bad day, he is able to give me warning, and avoid me when he's feeling irritable from the pain. He also is more able to recognize fatigue and rests when he needs to.

For me, the fibro isn't that predictable. He's able to recognize the status of my flares better than I do.

It's really hard to avoid "fighting through it." It feels like if I don't fight it, I'm going to have no life at all. Fatigue and brain fog are my worst symptoms. I often feel like if I didn't fight it, I would sleep the rest of my life away, which seems worse than the pain itself. It feels like I have a choice to "fight it" or live in a semi-comatose state.

Learning to know when to rest and when to fight isn't easy. Even knowng when you're in a bad mood isn't always easy. As I tell my husband, When I'm irritable, it doesn't feel like there's anything wrong with me. It doesn't feel like I'm being irritable, it feels like he's being a huge jerk.

Often my husband recognizes my flares and their severity, far better than I do. Learning to accept this hasn't been easy though - when he tells me I'm flaring and need to rest, it can feel like he's being overprotective or worse that he's just trying to get rid of me to make his life easier (and partly that probably is true, as I know I can be a giant PITA during a flare).

mandagrl1
01-11-2011, 05:19 PM
Emaline, so sorry to hear your daughter suffers them both! I'll keep her in my prayers! Thank you for your kind words! :hug: Also, is Emaline your name? I ask because I have a cat named Emaline (named her after a song I love). I always loved that name and wasn't looking to have kids back then so I gave it to my sweet kitty! ;)

It's really hard to avoid "fighting through it." It feels like if I don't fight it, I'm going to have no life at all. Fatigue and brain fog are my worst symptoms. I often feel like if I didn't fight it, I would sleep the rest of my life away, which seems worse than the pain itself. It feels like I have a choice to "fight it" or live in a semi-comatose state.

That is DH to a tee! I am a morning person. I get up most every weekday at 4:30 and am happy as a lark to do it-he, however is my night owl. Up till 1 or 2am then dragging out of the bed every morning. I used to also blame that on irresponsibility-I mean, you're a 30 year old man-go to BED earlier, right? Well-now I understand, he just can't sleep. He's either in pain, going numb or having some restless leg or arm issue.

I just hate it. I wish I could take it from him and deal with it for awhile and give him a break. Avoiding stress in our lives is about impossible! lol With the rambunctious 5 yr old and him working with his family (uuugghh!) it's a daily task. I will keep all of your comments and suggestions in mind from now on though. I definately don't want him to feel imasculated or controlled by me or the FM, I just want it to go as easy on him as it can.

Thank you so much for relating your experience with it so easily! It really does help to have an insiders view of how it feels. I know he shields me from how bad it is sometimes because he doesn't want to burden me and I appreciate that to some degree, because there's nothing I can do to "fix" it, but I do want to know so I can make sure he has help and or takes care of himself when it's bad.

Do you find that the weather has any effect on your FM? Right now we're thawing from an ice/snow storm and I wonder if this bone chilling cold weather isn't making it worse?

Also, what tests did you have done before your Dx? He had bloodwork and 2 nerve conduction tests. At the last one, they mentioned another test that involves touching his muscles with a needle? Apparently they weren't sensing a reflex in some places where they were testing the nerves. He's terrified of needles though (literally-if he get's a shot or has blood drawn he either throws up or passes out cold) and it's done while awake, so he's a bit EHHHH about it.

Thank you all again! This helps me SO much!

LandonsBaby
01-11-2011, 07:34 PM
I was diagnosed with fibro in 2001. I'm trying to build my immune system and work on other issues but it's not easy.

Initiative
01-11-2011, 08:10 PM
I was diagnosed with Fibromyalgia in 2009. I literally shut down after that. It was hard to do anything, I didn't want to do anything. It was stressful and really horrible. It took me a year to actually get myself back into school, and now I'm in the process of losing weight. It took a really long time to get used to and be comfortable enough with it to continue with my life. I actually went and got my medical marijuana card. It's helped me so much, especially with coping with constant pain.

kaplods
01-12-2011, 01:31 AM
IDo you find that the weather has any effect on your FM? Right now we're thawing from an ice/snow storm and I wonder if this bone chilling cold weather isn't making it worse?

OMG, Absolutely. Weather changes are my biggest trigger (at least the biggest factor that I have no control over). Sleep deprivation and overexertion probably play a bigger role, but I've learned to manage them well with with medications and with self-care routines. So Weather is now my worst adversary.

Cold, damp weather, if it's consistent actually is less hard on my than a dramatic change in the weather. My pain levels are elevated during cold, damp weather, but not as dramatically as I experience with weather changes. So even when the weather dramatically improves, my symptoms will flare until the weather stabilizes. I dread weather changes more than I do bad weather.

Hubby calls me a better weather predictor than the tvf weather man. One really dramatic example this summer. We were visiting MIL for a cookout, and I was feeling awesome. A couple hours after eating, I felt dramatically horrible. My joints were hurting, I wasn't just foggy, I was slurring my words and I felt nauseous and dizzy. It was so dramatic I got panicky. I wanted to be home in my own bed immediately. MIL wanted be to lie down in the guest bedroom, but I just wanted to be in my own bed, so we drove home (about an hour drive).

When we started home, the sky was bright, the temperature was comfortable, but about twenty minutes into the ride home, the sky started to darken, and hubby said "oh, now we know why you were feeling sick," but we didn't know the half of it.

I couldn't keep my eyes open during the drive home, and I was undressed and in bed five minutes after we got home. Just as I crawled into bed, golfball sized hail started falling. It wasn't just a storm following us home, it was a tornado (we learned that about 10 minutes after we left, it started raining and hailing at MIL's).

We probably should have stayed at MIL's house. Hubby said the next time I get that dramatically ill (fine one minute, incapacitated the next) that we really need to check the weather radar before deciding to get into the car to drive home.


Also, what tests did you have done before your Dx? He had bloodwork and 2 nerve conduction tests. At the last one, they mentioned another test that involves touching his muscles with a needle? Apparently they weren't sensing a reflex in some places where they were testing the nerves. He's terrified of needles though (literally-if he get's a shot or has blood drawn he either throws up or passes out cold) and it's done while awake, so he's a bit EHHHH about it.

Thank you all again! This helps me SO much!


One thing to remember, is that it is essential to rule out everything else before diagnosing fibro, but not all doctors do. I thought I'd been tested for everything under the sun, and when we moved to WI, I was referred to a neurologist and he was horrified that I had not been screened for narcolepsy, brain tumors, MS brain lesions, and early-onset Alzheimers (that I hadn't had an EEG or a brain scan). After those tests, he concluded I did have fibro, but at least the others were ruled out.

Depending on the symptoms not everyone needs the same tests. Because my pain was more easily controlled than my fatigue, doctors were exploring the cause of the fatigue more than the pain.

I didn't have nerve function tests or anything involving lots of needles (thankfully, I'm also needle-phobic. For me one shot is fine, but if blood draws are prolonged or if I'm getting multiple needlesticks I also pass out).

I had so many tests, I don't remember them all. It was also hard to sort out the multiple diagnosis. Which tests I had for fibro and which tests I had that turned out to be the other issues I had (COPD, sleep apnea, autoimmune disease).

Make sure they tested for Lyme disease (I was tested three times for Lyme, just because the test can be somewhat unreliable, from what I gather).

If at all possible, I highly recommend a sleep study. My sleep study found sleep apnea (which resolved after I lost only 35 lbs) and periodic limb movement (Without mirapex, I thrash around horribly when I sleep. Hubby would end up with bruises). Also, I was spending virtually no time in the deepest stages of sleep, almost no REM. I couldn't believe this, because I dreamt alot, but the doctor told me that remembering a lot of dreams was actually a sign of poor REM sleep, because if I slept through REM I wouldn't remember as many dreams. It's only when you wake during REM that you remember your dreams. I thought I was dreaming a lot, but I was just getting woken up during the dream.

If you deprive rats of REM sleep long enough, they die of immune and autoimmune disease (my autoimmune disease doesn't seem like coincidence anymore).

Sleep anomalies are very common in fibro and cfids (many doctors believe fibro and cfids are actually the same syndrome), especially ones that involve waking frequently and insufficient deep sleep. It's hard to address some of the issues, because sleep studies are expensive, and usually when they're covered by insurance there's a limit as to how many or how frequently they're covered.

The meds that helped me the best were the ones that helped me get good, deep rest. Amitriptyline (which isn't used as an antidepressant very much anymore because it causes drowsiness, but that's perfect as a sleep aid), cyclobenzaprine (a muscle relaxant that helps prevent the severe pain and numbness that woke me in the middle of the night), mirapex (to address the periodic limb movement - without it I thrash around so much hubby gets bruised), fish oil, folic acid and vitamin D (ask your doctor first, because supplements can interact with meds), caffeine (only during the day).

And I use tramadol for pain.

Another tip that has helped tremendously is a sleep mask. I read that people get deeper sleep with a sleep mask because it blocks out more light, so I tried it (I was skeptical), but I do sleep deeper and longer and with fewer wakings with the sleep mask.


Warm water exercise programs are great if you can afford and find them. If you're interested, contact the local Arthrits foundation or department on aging or United Way, if you're interested. They can help you find the nearest program. You can also call local indoor pools and see what temperature they keep the water (83 to 88 degrees is ideal).


Geez there are so many tips. You can browse the fibro threads here and probably find all sorts of tips. This is why the local fibro support groups are so helpful, you hear all the strategies other people have found helpful.


There are some very good books on fibro, but two I highly recommend are

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland

Fibromyalgia Advocate by Devin Starlanyl


They're written by a doctor who has the conditions she's writing about (and was on disability until she was able to get her symptoms under control).

I've read tons of books on fibro, but these are the only two that I've purchased. The author is a bit too open (in my opinion) to unproven therapies, but I can't really argue with the "some people find this helpful and it's worth trying" approach.

ddc
01-12-2011, 09:53 AM
One thing to remember, is that it is essential to rule out everything else before diagnosing fibro, but not all doctors do.


This is why I was wondering if he'd had an MRI of his spine. Have they ruled out any disc problems that could be affecting the nerves?
I was totally not expecting to be told that I had a disc problem and I seemed to have some of the same symptoms. Just a thought.

mandagrl1
01-12-2011, 11:49 AM
He hasn't had an MRI yet. Our insurance is very strict on when they'll do one and they want to do some additional analysis first. Even when/if they do one, it will cost us about $1000 out of pocket for the deductable. Yowch! If it pinpoints the issue, it would pay for itsself a million times over though!

kaplods
01-12-2011, 03:13 PM
Medical costs are insane, even with great medical insurance that paid 90% of everything, we still ended up having to file bankruptcy due to my medical expenses (Hubby lost his job essentially because of my illness for taking time off work to take me to doctor's appointments. Even though he always made up the work by working extra hours. His company had unreasonably strict attendance policies, and even though he was "theoretically" protected by FMLA, they fired him stating performance problems even though every one of his employee evalutations were stellar. They didn't even give him a single poor performance review before firing him (as it turns out, in less than a year the plant moved to Mexico, and they begain firing as many people as they could, to save money. Hubby was just the first of many to be fired. Hubby probably could have sued, but we didn't).

If we had to do it over again, I don't really know what we'd do. On one hand, the diagnostic tests are very important, and yet I still wonder whether all of the tests were necessary (and if not, which ones wouldn't have been).

I did learn to look at prescription drugs differently. I had no idea that pharmacies charge such a wide descrepancy of charges. A medication one pharmacy may charge $200 for, another might charge $50. Not to mention that there are drugs that are virtually identical. The new version of a drug may cost 30 times as much as the older version, where the improvement is only that the newer drug is extended release so you can take one pill a day instead of two or three (Taking one pill is nice, but I'll gladly take two or three pills a day in order to save $200 a month).

Our primary care doctor is very understanding of cost issues. He has Walmart/Sam's Clubs discount list programmed into his blackberry (most drugs are $4, and the rest are either $7 or $9).

What's really shocking is that when I originally switched to the discount meds, how many of them worked better for me than the more expensive versions. There were only a few meds in the last six years for which there was no cheap equivalent (and my doctor gave me samples for those whenever he could).


I know this is a bit off-topic, but with any chronic illness, it's important to know that you can save tons of money, just by knowing that there are cheaper alternatives. I assumed that there would be greater risk of side effects in the older medications, but apparently it's just a tactic of drug companies. Come out with a "new" version of a medication when that medication goes to generic. People (not just patients, but even prescribing doctors) assume that newer is better, so many will choose the new, just because it's new, not because it's better.

Even doctors that try to be smart can fall into the trap. For example, our doctor knowing we have money issues, will give us free samples of new medications. Because they're free they save us money. But when the company stops giving out samples after the med has been around for a while, if it is working for the patient, the doctor and the patient probably won't want to switch.

I faced that with a recent blood pressure medication. When a generic version came out, my doctor and I were both reluctant to switch, but in the end we decided to take a chance. I'm glad we did, because it saves us more than $50 per month.

When you have a chronic illness, you have to learn to be a smarter consumer of medical services (really though eveyrone should be. Part of the reason medical costs are so high, is because so few people ever question the expense. Comparision shopping really isn't part of the norm).

ddc
01-12-2011, 03:44 PM
Oh yeah, I know how it is paying for medical stuff. I have a $5000 deductible plan, so I'm paying out of pocket for my stuff.
I was able to shop around for the MRI and pay the self pay rate which saved me quite a bit, I think.
I paid $472 cash, but they would have charged my insurance company $1400!!! It's outrageous how our medical system is in the US. Craziness.
Since I got the cash/self pay rate at the imaging place, I've been asking everywhere now if they have a lower self pay rate. So, far the doctor's and physical therapy haven't been any cheaper :(

mandagrl1
01-12-2011, 03:50 PM
I feel for you all. Last summer I had two sleep studies and was Dx with sleep apnea. They wanted $500 out of pocket for the cpap. I called all over and no one would finance it and the rental costs were outrageous too! I still need one, but I know it's do to this weight, which when (not if, but WHEN) it comes off will likely not be an issue anymore.

Serval87
01-13-2011, 12:14 AM
My mother has fibromalgia, and it is both a physical and emotional burden on her. She stays depressed because of the constant pain, and nothing ever seems to lessen it, though she may be lucky and not have as much pain some days. She can manage to clean the house, but it will cause her more pain. She isn't able to exercise, and when she does go to town, she is in so much pain once we get back that she sometimes has to lay down (well, she usually sleeps in a chair, because the bed makes her more stiff).