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In a fog and in pain.

Sep 23, 2016 1:21 PM

I was diagnosed with fibromyalgia last week after spending the last twenty years trying to get a diagnosis. I'm 40 and feel like I'm 80. It's sad I suffer from the same aches and pains my parents and mother in law do at 60. My mother was diagnosed in the 90's and I have watched the way it disabled her over the years.
I have been misdiagnosed over and over again going through painful tests and procedures and taking useless drugs leaving me feeling hopeless. I feel like after all I've been through they finally got it right.
So what now? Learn to control my symptoms. I've got a lot things to try but I'm worried none will help. Any ideas? What works for you?
And how do you deal with the fatigue?

Sep 23, 2016 2:34 PM

Ctsego
I am so sorry you have been dealing with this for so long. :(

Finding what works for you will most likely be a trial and error phase. I think one of the mistakes most of us do is when we have a day where we feel good we tend to try and do as much as we can instead of pacing ourselves.

For my pain I take Nucynta and Tizanidine (muscle relaxer)

For the fatigue I was recently approved to take Nuvigil. It has been a real breakthrough as I was in a flair where I could not stay awake.

Before that they had given me a different medication .. I need to look up the name. But it contained a prescription strength of Folic Acid and something else.

My doctor said that most women can't absorb the folic acid otc vitamins and that most of us are low on folic acid. The medication/vitamin he gave really worked as well but it wasn't covered by insurance and was costing me 60.00 a month. Ouch!

Sep 23, 2016 2:46 PM

Thank you for ur advice. I'm gonna look up nuvigil. What specialty is the doc who prescribed it? Exhaustion is a major problem for me.

Sep 23, 2016 2:51 PM

Rheumatologist. :)

Sep 23, 2016 3:57 PM

Ctsego, welcome aboard. Unfortunately what works for one may not work for another. I'm sorry you've suffered for so long and have been misdiagnosed. Fibromyalgia is not easy to diagnose because it mimics so many other issues. I'm 51, have been in chronic pain for 23 years and moderate, annoying pain from the time I was in high school. I have come to the conclusion as of lately that it really has a lot to do with your mindset. That being said, I have days that I cry, vent, whine, bitch, etc... But I find it I concentrate on all of the good things that happen every day (no matter how badly I'm hurting) it makes it easier. You can still have a good life with joy and happiness even with chronic pain. I have a list as long as my arm of things that are wrong with me, have had 30 surgeries with more on the way and I still try to remain positive and offer pick me ups to my peeps here in the community. Hearing the birds sing, the sun shining on your skin, a song that brings you to a special place that made you happy, a call from a good friend, sharing laughter, being naughty and creating Shenannigans... LOL!! I'm a baaaaaad girl!!! 😊😜🤗. I know meds are expensive but you can get help from the pharmaceutical companies to pay for them. There are also other programs available through the state to help with the cost of medications. You have to mourn the life you wanted and don't have and make the life you do have work for you. Don't focus on how much you got done, be happy you got SOMETHING done. On days your body won't allow it, just go with it and rest and take breaks as needed so you can have a better day the next day. I use mindfulness, biofeedback, listen to music, dance (yes, dance.. Boogie down when that rhythm hits me), sing, meditate, and reach my hand out to others who need a lift. You'd be amazed how much better you feel when you can make someone smile and know that you helped someone feel just a bit better if even for a few moments. These are all the things you need to hold onto. Also, if you're able, try warm soaks in the bath, heating pads, massage, aromatherapy, injections, physical therapy, psychologist sessions, etc. That's about all I have in my arsenal.. I hope it's been helpful and I'll need a hand stepping down off my soapbox now... LOL!! Again, welcome, and I hope you find the support you are looking for. {{{Hugs}}}💕🙏🏻🌻😊

Sep 23, 2016 5:11 PM

Welcome to our community family Ctsego! You'll find lots of support here. I'll soon be 55 and I have fibro along with many other chronic pain issues. I started having fibro symptoms in 2007 but wasn't officially dx until 2012, on the heels of recuperating from major surgery that caused me to quit my job. It would be unbelievable to see how I've gone downhill if I weren't living it. Like you there are days I feel older than my 86 yo dad. I can remember my grandmother going through the same stuff though it wasn't even heard of, nor did she see doctors. Another cousin has fibro also and I'm convinced my grandmother likely had it undiagnosed, and possibly my mother. An older sister may have it.

To cope...
My own family realized how sick I was after my hubby got scolded by a doctor for a comment he said, where she told him he "had no idea what I was struggling through" (& educated him). He's now my best advocate and supporter, a VERY important step in getting through it; having someone else go to bat for me when my body won't let me do it myself. Having someone who believes and supports you is important. This community is also important because I can openly discuss anything here without burdening my hubby without letting him know just how bad I am. And everyone here understands, offering support and suggestions. I actually broke down crying recently and apologized for being a burden. He hugged me and held me close telling me I wasn't a burden. Then he quietly said he'll be by my side until one of us dies. Knowing that gives me strength, because sadly so many here have been walked away from because the other person couldn't handle it. I am blessed & I don't take my hubby for granted.

I had to learn to accept what was happening to me and grieve: feel the anger and frustration for the life I wanted and planned to have, but what would no longer be; to cry and get it out; to learn as much as possible about my conditions so I'm not blind in my own healthcare decisions; and to figure out what I can do to have the best possible life I can.

I've made some dietary changes; low sugar, salt & carbs intake; taking vitamins D3, B12, folate (all deficiencies) and magnesium; eating more fresh fruits and veggies, and less fatty meat s; losing some weight & exercising (treadmill, stretches, stretch bands & very light hand weights).

I've learned to listen to my body's signals and heed them. I rest when I need to and do not feel guilty about it. I pace my activities with rest periods between each. On bad days I do nothing but minimal daily living needs. On good days I make sure not to overdo it, but it took me 4 years to learn that. I've learned to speak up and tell others when I need help or why I can't be there, or be the only one, to help others (like telling 4 siblings I need them to pitch in with our parents when our dad got sick). And when I can't I have no problem saying "NO" anymore. If I don't take care of me then I'm no good to help anyone else. It's actually worked out very well, siblings and kids, & grandkids helping out now. I breathe and relax. ....Pooh got to break here as itching is driving me nuts!!!

Sep 24, 2016 4:41 PM

You are all some of the most courageous women I've talked to. Your positivity is awesome despite what you are going through. Your answers comfort me knowing there are others who care.
As for meds right now I'm on lyrica, elivil, zanaflex, and pristiq. I take many other meds for my myriad of conditions. I can't imagine how much pain I would be in without them knowing how much I hurt while I'm on them. Of course I also take Motrin and excedrin ( the caffeine helps me with my fatigue).
I'm very fourtunate to have a supportive and loving husband I've been with for over 16 years. My ex mother in law moved in a couple months ago and is a life saver. I also have my 16 year old son living with us and he helps out a lot too.
I thank you for your supportive reply's. I think I have found a place that will be good for me. I live in the country and don't get out much.

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