I’m new to all of this…all except for the pain. My pain is extreme on most days, but that is the only thing I’m familiar with. It wasn’t til a few weeks/months ago (can’t remember) that my best friend (who’s also my neighbor) brought up the “fibro fog”-she’s been diagnosed with it too.
I just need to hear some of your explanations of symptoms to help me realize what symptoms I’m having are from Fibromyalgia. I may hv RA too and I’m havin a hard time telling the difference what symptoms are related to which disease. All I know for sure, is I’m in ALOT of pain!
hi Joy. i pretty much agree and relate to what lovett said.. I love your name. My dad loved to speak of joy and did so alot in his last months on earth. I had written a poem a few years back that was entitled 'A Joyful Day'/ i read it to dad and he kept in by his bedside in the clear folder i had given it to him. Most of the staff adored my dad and when they saw the poem, he was so proud to say that his daughter had written it . I know this all has nothing to do with fibro. It just brought the whole lovely memory of my dad with your name. so thank you for that. i do hope you will find answers you need and ways to deal and cope. i send you all the best and BIG HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
suzie
Hello Joy,
I was only recently diagnosed, so too am having trouble with what symptom might be ddue to Fibro, also have arthritus, but not RA. From what I can gather it is unexplained pain which moves around the body, extreme tiredness, fatigue, and altered and extreme pain sensation. Do others agree? It seems to affect everyone differently.
Take care Anne
Thank you, so much! This info really helps. I will definitely give that list a try! I downloaded an iOS app called "CatchMyPain" and it is helping me keep track of my meds, pain, & I can even email my doc the info! I just had no idea how bad it was until I stopped & took notice. I was raised to 'keep on truckin' if you have pain which explains my only realizing these symptoms recently bcz I had ignored them for so long. Thank you again. ;-)
Thank you, Suzie! That is such a sweet, sweet story. I have always loved my name too. My mom said I came out smilin' and that I was a happy child but her and I agree that I made up for it in my teen years, Lolz. ;-P I would LOVE to hear your poem someday. I have written several myself and I am currently working on several novels. Maybe we could swap poems? ;-)
Thank you, for the best wishes. When my bestie says "Hugs" I reply with "Kisses", so here goes: Right back atcha but with LOTZ & LOTZ of BIG KISSSSSSSSSSSSSSSES! ;-)
Hello, Anne! (my middle name is Annette ;-) ) Thank you for the advice. Maybe we can head down the "newbie path" together? I have been tracking every bit of pain for last 24 hrs and it has been rough trying to describe it. I think the best thing we can do is to learn how to describe the pain and other symptoms so we can relay it back to our doctors for appropriate treatment. I also want to learn because I need to know how to explain to my husband how I feel from day to day. I have gotten so frustrated in the past that it comes out as anger and I catch myself snapping at my husband. Since I have started the mission of 'labeling my symptoms' I have noticed a significant decline in my frustration.
I cant wait to talk to you more!
Kisses!
Hello Joy,
I think you're right about how important it is to learn to describe the pain. Especially for husbands/partners.
Also for other members of the family. I know it is difficult for them to understand, and I don't want them to think I am moaning all the time. It is a frustrating condition, and I do like your idea of labelling symptoms. One thing I have learnt, as I look after my grandchildren quite a lot, is for my family not to ask me to do things at short notice. I need to pace myself ie resting before I have to babysit!
You take care
Anne x
Hi Joy,
I agree with Lovett too, that each person may manifest different symptoms. I am so sorry to hear that you are suffering. I hope some relief is on its way to you!!
I have lots of symptoms that vary with time and triggers, the most common are: I have constant body aches where I can’t stay still because I am so uncomfortable in pain, daily fevers, exhaustion, difficulty staying asleep, IBS etc. I also have severe osteoarthritis, and the pain from that is different from fibro where I get burning , terrible pain, in the joints of my fingers, thumbs and wrists; and knees. Fibro seems to hurt whether I move or not, arthritis seems to hurt way more when I use the offended joint, at least that is how I am telling them apart.
I hope you feel better soon.
Hugs x 1000
Hi Joy,
My symptoms are bad pain in the tender points especially back of shoulders, neck, lower back, and strong aches in legs, arms, knees and feet that keep me from sleeping at night. I also have headaches (migraines) and pain and discomfort from Interstitial Cystitis. I also have several other conditions. The chronic pain is horrible, day in and day out sometimes it is mild and most times it is moderate. Also, I have CFS which is debilitating in itself. I try to find ways to not focus on my pain like reading a book, crocheting, watching a movie, playing my guitar and listening to music. There are days when my FibroFog is off the charts and I feel confused. On these days I feel really depressed and anxious so I really take it easy and generally stay in bed and relax. Hope this helped.
My worst symptoms are my joint pain. The muscle pain and twitches are so much better since I started the Gabapentin. Unfortunately they weren't as bad as the joint pain, oh well, what else is new. I can sleep much better now by taking Flexeril and Klonopin before bed. I've had years of extremely poor sleep, always tired but not being able to sleep, it was super aggravating. Fibro fog is getting to me, typing has become a problem because my fingers are uncoordinated and I forget a lot. I am and always have been a list maker, this comes in very handy on the foggy days. Anxiety, depression, which comes with many chronic diseases anyway. I have osteoarthritis in my thoracic spine, neck and hands, and have Type II Diabetes (tightly controlled).
I am having a really tough time with the pain. I feel so helpless when I have pain from Fibro because there is nothing I can do to make it go away for any length of time. I feel worthless for not being able to do even basic things, like cleaning our sliding glass doors, washing my car, etc. Any big arm movements kill my shoulder. I miss my walks, I used to walk 5.5 miles almost daily, now 20-30 minutes of slow/moderate pace on the treadmill kills my hips. They helped a lot with my anxiety and depression.
Sometimes the struggle becomes too much and I have an emotional breakdown, I go curl up and crawl into myself. When I'm done with that I come back out and continue the fight. For me, it is an exhausting existence. I don't even consider it a life anymore because to have a life is more than laying on your bed with a heating pad because sitting hurts, standing hurts. walking hurts. Sorry for being a downer.
Hey, but other than that, I'm great.