New to this, have questions and need some support

iVillage Member
Registered: 07-18-2008
New to this, have questions and need some support
4
Sun, 11-18-2012 - 2:16am

Hi,

So, I have been dealing with headaches, severe fatigue, back pain, etc., for years....  Doctors couldn't find a cause.  I went off Cymbalta (was on that for anxiety, insomnia, headaches - kind of helped so stayed on it for four years) after being laid off a year ago and things got soooo much worse.  The tricare doesn't cover Cymbalta.  After going off the Cymbalta my neck pain and back pain and hip pain started up so much.  I thought it was a hip injury and so did my doctor.  So after sending me for all kinds of tests for why I may be feeling all this pain, the doctor is now thinking its fibro pain.  Well, I have tricare because my husband is in the military.  I'm not so crazy about that insurance.  I went to a neurologist a few months ago while I was feeling all this back pain for my headaches because I do get migraines and they put me on neurontin but unfortunately it made my dry eye problem much worse and made me feel like I got worse depression symptoms.  It had been helping my back pain, though.   So, three weeks ago I went off the neurontin and he switched me to topomax for migraines so now my back pain is back full force and I'm miserable while I'm increasing my dosage on the topamax.  But I read that topamax doesn't do much for neuopathic pain.....  I use heating pads sometimes for the pain and it helps a bit while It's on, but as soon as I take it off I'm miserable again.  And I hurt all over.  I just am at a loss and not sure what to do.  I stay active so that I can work out the stiffness I feel. 

What exactly are all the symptoms of fibromyalgia?  Stiffness, muscle pain, back pain, hip pain, foot pain, anxiety, depression, extreme fatigue, daily headaches, neck pain, all without a real reason, like a break or a diagnosable condition, right?  There is no tear, no back problem.  I got x-rays, an MRI, a cortisone injection...  Took all these anti inflammatories.  They did all that for the hip and back stuff that happened after going off the Cymbalta (I never really thought there could be a correlation of discontinuing the medication and then getting that horrible hip pain; I thought I injured myself)  Nothing helps.  I'm miserable.  I'm only 30 and was thinking this is just normal for 30 that everything just starts to hurt.  Sometimes it just hurts to have my purse on my shoulder or to carry a shopping bag.  It hurts to sleep and I wake up all the time to switch positions.  Are these the sorts of normal symptoms for this?  I'm just kind of lost and would like to learn a bit more about this...  I obviously need to go back to the doctor.  It's hard to get appointments.  Who should I ask to see?  What sort of specialist?  I talked to my doctor on the phone (primary dr) and he said he thinks this may be my diagnosis so I'm going next Wednesday to see him and we are going to talk about this.  Anyway, any advice would help greatly!  Thanks.  :) 

iVillage Member
Registered: 06-06-2000

Welcome to the board!  It does sound like you could have fibromyalgia, especially since the doctors have found no other cause for your pain and other issues.  It's great that you stay active, because that's probably the most important part of taking care of yourself when you have FM.  The other important things to do are eating a healthy diet and getting enough sleep.  The probblem, of course, is that you can't get decent sleep if you are in pain, and there have been many studies that show people with FM have sleep disorders, or that FM may actually be a sleep disorder.  The biggest challenge is that no two people react the same way to medications, so something may work great for me but make you feel worse, and we tend to have odd reactions to medications in general, just to make things more interesting.  

My first suggestion is for you to write down all of your symptoms and how they are affecting your life before you go to see your doctor; it will help him/her focus on the most important problems.  I personally take tramadol for the pain; it's a non-narcotic pain medication, cheap, and it makes me feel more alert as well.  Most doctors have no problem prescribing it, as it's not something people abuse, though if you stop taking it without tapering off, you can have withdrawl symptoms.  The other thing I take is flexeril at night; it's a muscle relaxer and allows me to get a decent night's sleep and wake up feeling rested.  I exercise most days, either on the elliptical or yoga, or just walking, and my job is pretty active as well.  I also see a chiropractor/Chinese medicine doc who does deep tissue massage, adjustments, electrical stim, acupuncture, and herbal remedies.  I don't think I'd be able to function without my visits every 2 weeks.

A lot of articles on FM tell you to relax, as if you can just relax on command, or remove some of the stress from your life, which is pretty annoying and unrealistic to say the least.   Then there are all those people in our lives who tell us you just need to push through the discomfort, or offer other glib advise, grow impatient with us for being slow or not cleaning the house everyday or whatever, and tend to think we are just drama queens/kings, because they don't understand how much FM affects your energy level and life in general.  Dealing with them is a huge stressor in and of itself, and you can't exactly stop talking to everyone, which is why we have this board here for you to ask questions, vent, or in my case, whine on occasion.  We're here for you!  If you have any questions at all, feel free to ask as there are a lot of wonderful people here who have spent years dealing with the same issues.  Having a chronic disease tends to make you feel isolated at times, which is why I love these boards so much.  There's always SOMEONE who understands what you're going through.  

iVillage Member
Registered: 07-18-2008
Hi! Thanks. Yes, support from others helps. My husband asked me how I could hang out with friends if I supposedly have this pain. He said he gets headaches. He doesn't understand. How do I explain it? How do I explain the exhaustion? Yes, I go out sometimes. I force myself to even When I feel like crap. Sitting at home on the couch all day every day after work and on weekends will make me feel more depressed and I'll have no friends! He seems to kinda think I'm a drama queen. Anyone have experience of home to describe it? My doc is sending me for an arthritis test for another last test. And thank goodness I don't have the other symptoms of MS, which runs in my family! But this pain and headache is no joke. I went to my doc last week in tears and told him I can't tak it. Everything hurts. I felt better on cymbalta. Not perfect but about 40% Better. I've been off 11 months. He's going to request it since its for pain not depression so tricare may cover. Then I can give it a try. Last year I was feeling better than now. My anxiety is also through the roof. So it'll help it too. My hubby is in the navy. We should be together again in jan 2013 finally. We've been apart since may 2011. I'm visiting him now and plan to move since he's not deployed anymore. My anxiety from work got so bad I fainted last week at work. I can't breath. I'm having panic attacks. They overloaded me. It's killing me. I was laid off in jan 2012 and hired in July 2013 but this job is hell so after December I'm done. I know it's making things worse. I worry excessively. My doc also wants me on the cymbalta for that... I'm taking .5 Xanax as needed when I can't breath. It's scary. This job is too much. Not good for fm huh?? What else do you have for advice? What articles are good for friends/family to read to understand? Granted I don't have arthritis tests are negative. I do have some PTSD from chipdhood. Read that can lead to FM. Thoughts? Thanks so much for your info and support! <3 I feel isolated and alone sometimes. And I've lost friends. They think I'm antisocial..... Hope you had a good thanksgiving!
iVillage Member
Registered: 07-18-2008
Oops meant laid off jan 2012 and hired at a new Job July 2012. Plan to move into a place with my husband, 350 miles away, in jan or feb 2013. I'm going to quit my job in dec 2012 or jan 2
iVillage Member
Registered: 06-06-2000
Thu, 12-06-2012 - 4:42am

Sorry, I've been checking every few days, but just saw your post!  I must be getting more "foggy" or there are still a few issues with the new board formats, lol.  It's really hard to describe and explain how you are feeling to someone who doesn't understand or have a chronic illness.  Healthy people really can't fully grasp the impact it has on our lives, which I guess is just normal, you know?  I explained to my kids that when I am not feeling well, it's like I've had the flu, but the second day of the flu, when the high fever is gone but you still feel horrible, achy, weak, etc.  They can understand that, and have no problems helping me out a little extra around the house.  Kids are easy compared to adults, though, because as we get older, we form impressions and opinions, and it's really hard to change them.  Next time your hubby has the flu, maybe you could tell him that you feel like that every day, and at some point, you just have to make yourself move and do something because it's bad enough to feel like crap, but feeling like crap and being isolated from the world is even worse.

I would suggest you try starting, slowly of course, some form of exercise program, be it yoga, walking, whatever.  I do yoga because it helps my balance and makes me feel better overall, especially from an emotional stand point.  I follow along with free podcasts on iTunes, "yogamazing," there's even a routine especially for fibromyalgia.  I can't tell you how much it helps me to exercise!  I do the elliptical every other day, with a day or 2 a week off to rest, unless I'm flaring up, and then I just try to walk slowly and do some healing yoga poses.  I also go see my chiropractor for my every two weeks torture sessions, which don't always feel great, but I will swear by him helping me live a normal enough life.  He does electrical stimulation, deep tissue massage, acupuncture, adjustments, and recommends herbs, etc. to make me feel better.  I've had great results from all of this; I exercise 5 -6 days a week, work 12-hour shifts, look after everything at home, and managed to go out last Saturday and dance like a fool for over 4 hours.  OK, I was super sore for a few days, but you know what?  I had a blast, and if I didn't stick to what's worked for me, I would've been at home in pain and miserable.  I highly recommend tramadol for the pain, too.  It's not a narcotic, but it works great for me.  If you have any questions or want to pick my brain some more, just let me know.  I'm here!