Fibromyalgia - Help!?

[Nausicaa]

Quote:
I would seriously doubt you have anything like ADD... please don't let them say there's something going on mentally... What doctors forget is that when you are in so much pain, of course it will be hard to focus, hard to feel energetic, and happy. If you are able to rest properly, eat well, and somehow manage the pain so that you can function(even to the point of without needing too much RX) .. then you should get back to a point of being without so much fatigue and such. It takes time though, it really does.

I'm rather anti-pill though after going through a phase of trying the things the doctors gave me. A lot of them will make you feel even more fatigued, lethargic, or unable to focus. Sorry, just being told by a doctor that they think you might be ADD just set me off!!

 

[sutillman]

I seem to manage fairly well until Thursday's. I'm pretty burnt out by then. I try to rest on Sunday's so I can recharge. Then I'm good again until the end of the week and the cycle starts again. With the arthritis and the fibro it really gets to me some times. Just have days I just don't want to get out of bed, but I make myself keep going. I've had a cold and sore throat all week and just felt like going home from work and going to bed. Instead I cooked supper, washed three loads of clothes and headed for the chicken pen. Chickens are the best therapy around. At least they will listen to you complain about how you feel like crap and just squak or crow in reply!

 

[chubbydog811]

So to take the topic a slightly different way - any of you who still haven't gotten help get tested for Lyme disease? I went through 5 different Dr's. First said it was my thyroid, second was a thyroid specialist that said it wasn't that low. Third was another regular Dr - said maybe fibro. 4th was the joint specialist, said most likely fibro, but they have no idea (and it's pretty much in my head). I had a blood tests with every visit, as well as the crazy long question sheets that didn't ask the right questions. 4th was a lyme specialist, and she said I had a low level, but enough that it could cause all my issues (joint pain, always tired, thyroid issue, fibro, ect)...Treated for lyme, and it got better.

Just putting that out there for anyone who might be beyond frustrated about not getting any answers. Thing is, unless you have a REALLY good Dr that believes in Lyme disease, you wont show up on the test with any kind of level. I don't remember what the specific test is, but there are only 2 test really that will say if you have any kind of level for it or not (mine was really low, and wouldn't have been picked up on the normal drs test)

 

[sutillman]

I was tested finally after a long process of doctor's and specialists. Even though when my symptoms really got bad and I explained I had just gone on a camping trip in the summer and had a bite on my head that really swole and itched, I still was not tested. My primary doctor told me he tested for that, but after two years the doctor at the walk-in, which is hospital affiliated checked and it was never done. So she ran the test and it came back negative. Lyme disease if very hard to diagnose also.

 

[EweSheep]

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If you had Lyme disease, you would be sick all the time and have "circular" bull-eye sores? All my tests are fine except for bile count is high (I dont have a gall bladder) and rhem. Arthiritis positive.

 

[SunAngel]

You can add me to the fibro list....and it really sucks!! I also have Occipital Neuralgia from disc degeneration in my neck & pinched nerves and severe Carpal tunnel, plus arthritis of some sort. I really do need to see a Rheumatologist at some point.

I was taking Gabapentin, Tramadol, Baclofen, Celexa and Vicodin for breakthrough pain. Then we lost our insurance.

So I quit taking everything when the scripts ran out, went through a horrible week of withdrawals and then terrible pain every day for a little over a month.

Just last week I finally got back to the doc and since money is tight, she tried to find some of the $4 meds that might help at least take the edge off.

So now I am taking Tramadol 3x a day, 800 mg Ibuprofen once a day (usually at bedtime), Amitriptylin once a day (it helps with pain and sleeping), Hydrochlorothiazide & Lisinopril for edema and blood pressure and I have Celexa in case my mood gets to where I can't handle the pain...Fibro really messes with your mood and wears down your ability to cope. I also just started taking Super B-Complex vitamins...they are supposed to help with pain and blood circulation, not sure if I notice any difference yet though.

I still feel cruddy on and off during the day and can barely move after cleaning chicken coops or any other strenuous activity. But at least the meds take the edge off. The Gabapentin worked the best for me, but I refuse to pay $85 a prescript. Hot showers are a God send! Would give anything for a hot tub! All I know is that its different pains all throughout the day and some days are worse than others. I struggle with short term memory loss constantly, so annoying. Trying to concentrate, is really hard as well, its like having ADD.

I would really love to smack the non believers right upside their heads! And have them swap bodies with me for a week. Then they can see what it really feels like! I am a go, go, go type of person and now at 41, my body just quits on me halfway through most tasks, that is not in my head!

I hope you find some combo of meds that work for you or find a great specialist that really knows how to treat what you are going through. Thanks for starting this thread, maybe we can all find other things to try after seeing what each of us takes or does to deal with the pain.

 

[Sierra pachie bars]

I have been dealing with fibromyalgia for about 10 years. They say it isn't progressive but it for me has been. I have gone downhill after I contracted fifth disease at the school I was working at. I never seemed to bounce back to my old self. I have other health issues but do feel the fibro is the biggest beast. It is touch and go on what day my body chooses to let the medications work. I had to sell our two story house when I kept falling or couldnt make it up or down. A one point i was unable to walk. Then dont get me started on the CFS. Oh and the IBS that nobody talks about with the fibro

I can never plan things in advance, I have to go day by day. I have heard it all from non believers , all I can say is they are lucky to have that choice because I dont have it. My daughter got fibro diagnose when she was only 9. And they really took their time to be sure that is what she had. It is hardest thing in the world seeing your child go thru it. I have to put on a strong face because she sees it. She would cry all night in pain, doctored swore it was lupus. Finally doctors at one of the best hospitals out here gave her diagnoses. She's doing better since I am homeschooling. She seems overly sensitive to noise and couldn't handle the sounds in public school. Her mirgrains are so bad. Medications is helping.
I have a support group that has been so helpful. I do not think I could have coped with all that has happened without them. When a horse fell on my little boy , i just wasn't sure how much more I could take. Then to have same son diagnosed with Autisum, just would not be sane without those ladies in the group.
My daughter is still dealing with it and coping. Just seems not to be many children so she can share how to deal. And most people act so rude and mean even when you mention fibromyalgia. It is a nasty beast that takes over your life. It reminds you every day. That it has you. I miss the old me. I no longer remember what it is not to feel pain all the time. Most people don't think twice about flushing a toliet , things like that.

 

[chubbydog811]

Quote:
If you had Lyme disease, you would be sick all the time and have "circular" bull-eye sores? All my tests are fine except for bile count is high (I dont have a gall bladder) and rhem. Arthiritis positive.

Not necessarily true, in the sense that you would see it or always be sick. It is possible to get a bullseye and not see where it is (I wear jeans/caprees and elbow length short sleeve shirts all summer - could have been on the back of my leg, back, arm, ect). My issues came on almost over night, and I had to deal with it for 2 years before anyone even thought it may be lyme. I was always off/sore/in pain/tired/no attention span/ect, but I am also a stronger person (in the sense of farmer type) who rarely gets sick, and if I am sick/injured, I naturally "suck it up" so it never comes off as bad as it is anyway. Where as my friend's health isn't as good as mine, her test came back screaming lyme, and she had a really hard time with it.
That's the problem with humans, everyone shows things different ways, so the "Text book" answer isn't always there.

But anyway, I share the frustrations of suffering and doctors not having a clue. Just trying to put another option out there for anyone who feels hopeless with finding out their issue. Not saying this is everyone's issue, just something else to think about if you haven't already.

 

[Laurajean]

Quote:
Well, there is a very clear examination that is done to determine an FMS diagnosis, one of which are specific pressure points on your body. You can find a chart of this online. I've had FMS for 11 years now. Well, I should say that's how long I've had the actual diagnosis. I understand fully that desperate times call for desperate measures, but that's a lot of Ibuprofen to be taking on a daily basis. Whether you feel it or not, that's going to tear your insides to shreds. I take Tramadol, it's the only thing I've found that works on the pain, other than narcotics, which I refuse to take. If I took an addictive drug every time I was in pain, I'd be a drug addict by next week, which of course would only add to my problems. I take the Tramadol not daily, but when there is a task that I need to get done, or an event to go to where I really need to be pain free. Otherwise, I've just learned to live with the pain, because I refuse to take pain pills on a daily basis.

I used to do Acupuncture, which surprisingly did a very good job of alleviating muscle pain and weakness, but unfortunately I can no longer afford it, and most insurances don't cover it. I take Cal-Mag (Calcium Magnesium) at night, which helps *somewhat* with sleep and also with muscle pain. Aside from that, I've tried all kinds of herbs and supplements over the years and none have really helped. Sleeping has always been a huge issue for me.

Exercise and FMS is a true catch-22 scenario. Exercise does alleviate FMS symptoms, however, overdoing it exacerbates the symptoms, so you need to be very careful. I find walking to be the best exercise for me, CASUAL walking, not speed walking. My acupuncturist also taught me the great benefits of what she calls "natural movement"; meaning try not to sit in the same position all day, or do repetitive movements too much. Try to move around, even if it's simply standing, bending over, moving your neck and arms, etc. For example, I do this during commercial breaks when watching TV. When an ad comes on, I stand up, bend over, try to touch the floor, stand back up, move my upper torso around, raise and move my arms around, etc.

Years ago, I used to do B12 injections in my leg, which I did not find to be of much benefit.

The biggest issue for me, is making myself move, even when fatigued. It is very easy to sit around and do nothing because of the pain, but moving is essential. It does not have to be vigorous. I'll try to think of the name of the book I read, but years ago I read an excellent book on how to squeeze in exercise in otherwise daily mundane activities. It was written by a woman who used to be an olympic runner, and was in a bad accident and unable to get "normal" exercise. It involved a lot of multitasking. Things like cleaning the shower while you took a shower, etc. If I can remember the name I will post it. I have to practice VERY CAREFULLY how to not overdo myself and stay within my limits. I find myself determined to perform activities that I used to be able to do out of pure stubbornness, and I have to constantly remind myself I can no longer do things the same way that I used to. This doesn't mean sitting around accepting the pain and being lazy, but simply changing the way I do things. For example, I used to clean the house once a week: doing the whole house on a Saturday. Now I have to do one room at a time, and do another room a few days later. These adjustments are necessary. On days that I am pain free, I get excited and have overdone it many times, trying to make up for all the things I didn't get done while in pain. This only results in me being bedridden for the next several days. The key is to stop before it hurts. Otherwise it's too late.

I would definitely agree with second, even third opinions, and trying to find a specialist in FMS. I traveled three hours from my home to see a specialist in FMS, who taught me a lot of valuable info about alternative options. I can no longer do that, but I try to create my own regime at home.

There is definitely a stigma that goes along with this illness. Many people believe it to be "in your head", that you're just "lazy", etc. It's very frustrating when people say "but you LOOK fine..." It took me years to learn how to ignore comments like that. I used to be a Licensed Optician, very ambitious, loved my work, and was forced to retire from my field, creating a lot of Depression. Now I am forced to work part time from home, I struggle, it's difficult. But I do what I can when I can, and I pass off anyone who chooses not to understand as ignorant. My own father didn't understand for years, until I had him go with me to a seminar, which had world renowned specialists speak on it, and others who talked about the affect it's had on their lives. THEN he finally understood it to be very real. I'd also recommend an FMS support group, not for a pity-party, but because others with FMS can offer excellent tips on how to cope, pain management, little ways to make life more manageable, etc.

I wish you the best of luck.

 

[Sierra pachie bars]

Also my advice stay away from savella. I now have heart issues and my internist is shocked I did not die. It was very very very bad. Had I have been warned properly of the side effects i would have never ever tried it.