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Oct 15, 2015 8:24 PM

I've been suffering for a year with FIbromyalgia, but it took until this week to get a formal diagnosis. My doc tested me for EVERYTHING under the sun first. All normal. I told her I was just tired of being tired and hurting all the time. She put me on Neurontin but I haven't started it yet. I'm kinda scared to.

Does anyone else have night sweating from FM flares? Also, I feel like I'm going through menopause a lot (ruled out by repeating blood work over a year). I have hot flashes like crazy. I'll be sitting here and all of a sudden feel like I'm on fire. I have to have the house temperature at 70 or I'm sweating. I have 2 fans blowing on me at all times. I'm driving my family crazy, they think I'm trying to freeze them to death. Anyone else like that???

Has anyone been successful in getting disability for FM? I can't work due to pain and severe fatigue, and I'm so incredibly depressed.

I have 4 children between the ages of 2-16, who I feel like I should be spending more time with, but some days I just can't even get out of bed. I feel like a miserable failure as a wife and mother. I'm going to find a support group in my area, for my husband and I. Our marriage is fine, but I would like to have him hear from others too, to see I'm not exaggerating. He's generally very supportive but I know he gets frustrated too.

Anyhoo, thanks for reading my rant.

Oct 15, 2015 10:39 PM

First off, a bit of where I'm coming from. I'm 15, diagnosed with CRPS, a nerve disorder. The docs think it's the closest match, but as CRPS is reversed, my symptoms fall into Fibro. I have had some tests done, but need some more because of family history I only recently learned about.

Okay, so when I first started having horrible pain (I had some pain all my life, but it got suddenly worse where on my pain scale 10 became a new 1, and so on) at 13, I had heat flashes all the time. Mostly in the mornings, I would open a for to below freezing temperatures, and close the door on my shoulders, to try to stay warm while having my neck bare.

Are your heat flashes in a certain spot, or time of day? Just wondering...

Also, about your kids, please don't feel too guilty. Many parents do, but it is NOT your fault. My parents both have chronic pain, and my worst relationship with a parental figure was my stepmom, who has never had pain that couldn't be cured within a week.

Yes, it made me sad sometimes when my parents were exhausted. Once, my mom was about to go into surgery, and was having tons of pain from an ovarian cyst, and she basically told me to leave when I came in, having had a nightmare. Knowing her, I just crawled into bed on a corner, and stayed perfectly still. It was a comfort, just knowing she was there.

My dad did construction, so he'd come home and want to play with me but not have enough energy. He also gets migraines that land him in bed for up to a couple weeks. Definitely find a support group if you can! Being a teen, most options I found were for adults or cancer patients.

Welcome, and I hope you find support here, and in your family. β€πŸ˜πŸ˜Šβ˜ΊπŸ˜„β€

Oct 15, 2015 10:55 PM

My heat flashes are really random. No rhyme or reason. Thanks for the kind words, I sure do appreciate it.

Oct 16, 2015 12:27 AM

I had fibro for about three years before I got diagnosed. However, my family doctor kept that from me for another three years until I had a car accident. So I've been suffering for 8 years, but the last two have been by far the worst.

Hot flashes are normal, though scary. I call it "Fibro Flare" too: when you hurt all over, you feel like you're so hot your skins melting off, you're so tired, not to mention irritable. I use a lot of ice packs and put them under my back in the summer time, and dry lentil filled heat packs for the winter.

I am so blessed to have such a good lawyer because she helped me fill out all of my disability package and got all my documents sent over to their office with registered mail. Talk to people who you know have done it (if not in person, try fibro support groups) and ask what you should put in that the package may not indicate. And please don't get discouraged if you get denied the first time. I know three seperate people, one who has three children, all with fibro, depression, anxiety and more, and they all for denied the first time. Make sure you know what they did wrong the first time and don't repeat it. Also, mention in your personal report that you're really scared of not having financial security and how much you want to work but can't. They like reading about an actual human being who is seeking help, not a hand out. Include notes from AAAAAALL your doctors and medical professionals. If you see nurses even, you can ask them. They might charge you no matter who you see, but it can make a world of difference between a rejection and an acceptance.

It's unfortunately normal in fibro patients and the guild plays into it so often too. You have to be aware of the fact that you have a disability. You wouldn't expect someone who is wheelchair bound their whole life to go run into a burning building without their chair to save a cat, so why would you expect uourself to be "Super Mom" 24/7? You are recovering and it may be forever before your recovery is "over", but you are very much worth the recovery. I went to a mental illness family support group at my local hospital with my mom (took my BFF once and it was helpful). I can tell you that my mom and I learnt how to communicate about my pain and depression much better after. Shouting matches between us no longer exist. I would call hospitals in your area to see if they have a mental illness family support group and a chronic illness/recent disability diagnosed group. The hospital ones are so much better because they HAVE to have both a certified therapist AND a general nurse to run the meetings. Plus, there's always handouts! It's going to be hard on everyone to cope and then adjust to your new illness, but it's totally manageable if you know some shortcuts. It'll definitely show you who respects you once you start telling them or showing people by walking with a cane(me) and everyone will just have to adapt.

I was so depressed because I thought for sure my life would be over (I'm 23 rn) but it's taught me that the universe sent me a sign to stop working and hustling so hard to become an unrealistic version of myself. I'm not back to 100% yet, but my nerve blocks get me out of bed, my gentle stretching helps me get to the kitchen, etc. I never knew how many people actually loved me until this happened. I'm not going to bs you and say "it was a gift" or something cheesy, but - I am saying that with the support I have and the tools I learnt, I'm working on my way to have better days than bad. It doesn't rain forever ❀️❀️❀️

Oct 16, 2015 9:51 AM

SBO817, welcome. I have fibromyalgia, sjogrens, anemia, & hypothyroidism (among many other things). The last three, along with menopause would more likely cause temperature sensitivity issues, like hot flashes. I know mines not from fibro. I'm almost 54, and I started hot flashes and menopause in my early 30's. I don't use neurontin so I can't give any info there. I have major temperature sensitivities die to my diagnoses above and the climate/season. I've been told it's very hard for anyone under 60 to get disability, unless they have many medical issues that impede their life.

We all struggle from day to day. Your children are old enough to assign age appropriate chores to help you not be overwhelmed with trying to care for them and your house. Create quiet time activities that you can either participate in our rest during them. Start teaching your older kids to cook, so they can help you in the kitchen (developing skills they'll need later in life). Exercise of any amount/duration has been proven to help fibromyalgia. I can honestly say I feel less pain when I'm able to do some. I just don't overdo anything, pacing every activity. Nor do I exercise in a flare.

A support group would be a good idea. Even consider your hubby going to appts so they can hear the doctor's explain. Let him read posts. It will take some time to figure out what works best for you. We are all different, but we're here to support each other. Hugs & a prayer! πŸ™πŸŒΌ

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