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Looking for insight


#1

Hey peoples. Recently diagnosed with fibro and I have so many questions to ask you guys! (Since it’s such a big community I can figure out whats going on) I want to know what/of I need to be prepared for (possible wheelchair, disability, hospital? Ect)
I have very precise points where I have pain, it feels like I have a big bruise (was in martial arts for a bit I remember the feeling)
I have what feels like the start of a bladder infection (the urge to go right after you’ve already gone) but it will only be there for a day.
Quite itchy from time to time (about once a week) how long should a flare last? I am too scared to talk about this with the people in my life. Can anyone help me our? Thanks :blush:


#2

Hi there, I am Rose. I suffer from this disease and unfort. have had to file for disability. You are in the right place. What kind of questions do you have. I can give you some insight from my point of view on how I live and how I feel but each and every one of us here basically have the same issue: PAIN. I feel like the pain is excruciating at times, I cry in fact. Some days are better than others. Yes, feeling bruised, def a part. You actually might want to make sure you don’t have a bladder infection, I am a nurse as well, just make sure you don’t have that too or trying to get one. I would def drink plenty water. Yes, having itchy skin is part of this wonderful disease, lol. I have to smile at this point. I am not sure why you might be scared to talk to people about this but we are here for you, rest assured. I have been on here a little while and have found this is the best place. I have had to vent on here as well, I get scared, I have so many emotions with this. I can tell you this, talking to people that also have this does help. I hope this has helped. Again, come back and get answers or just read what others say. That will def help. Anything else I can do let me know. I am listening!!!


#3

Fibro most definitely is not my friend, because it attacks wherever and whenever it wants. It does not care if you are all set to go to your grand daughters first ballet recital or not. It picks and chooses what part of the body to go after also. I have total empathy for any and all who suffer from Fibro/CFS, because I am one of you. I will never pretend to be a warrior to this illness, cuz it knocks me to my knees each and every time. Sometimes a week to 10 days with a couple of good days in between, which I truly relish every single minute with my grandchildren.


#4

Today has been a setback if you could call it that. I have made myself get out of bed and get dressed on my worse days with pain, but today is really bad. I have not been able to get dressed, I am at 4pm still in my pj’s and have been in bed all day. I am in great pain, super depressed, and have no desire to do anything. I have never stayed in bed the entire day sleeping. HOpe to feel better tomorrow.


#5

I completely understand how you feel, I was diagnosed with fibromyalgia 4 years ago and It’s really been exhausting with all the symptoms of the chronic illness. I have been having a really bad couple of months of non stop fibro flare, some days are better than others but some days I can’t get out of bed. Today is one of those bad days and it’s really hard talking to someone who doesn’t understand. I am truly greatful to have this forum of people that is going through the same. I also have degenerative disease in my spine, arthritis is my spine, 10 bad disc 4 of which I had surgery on and nerve damage. It’s really hard dealing with all this and trying to keep your sanity. My anxiety, ptsd, ocd and depression has been really bad through this fibro flare, THANK GOD for medical marijuana but sometimes that don’t relieve the pain. It’s hard going through this where people drop out of your life because it’s hard to move in all that pain. I’m sorry I suppose to be helping but instead I’m making it worse.


#6

You aren’t making it worse don’t worry. Thank you for helping :smile:


#7

I would want you to know that every one of us is different. I feel fortunate that even though I’ve been medicated for 35 years for chronic depression, I haven’t been depressed in probably 15-20 years. You’re going to need to do a lot of reading, and it seems one usually has to deal with one set of symptoms at a time. Choose your sources carefully, as some are not reputable. I will say that even though I take some meds, taking gluten out of my diet helped me a lot. (RELUCTANTLY removing the gluten, mind.) I’m considering removing dairy and nightshade vegetables too.


#8

I’ve recently had lots of itching, to the point that the scratching was drawing blood and I couldn’t sleep. Two weeks ago I bought the generic equivalent to “Gold Bond Extra Strength Medicated” body lotion. I had to keep reapplying the first few days until finally the itch went away. I just assumed it was just another Fibro thing that I will have to deal with.

My flares have lasted anywhere from 1-10 days. They don’t seem as long now. I think as time goes on the doctor’s are getting the right medications, exercises (like I feel like doing those :)) and other things dialed in. Or maybe I’m a little more used to it that at first. But I do feel much better with the knowledge I now have. A few years ago I was ready to jump off a cliff.

Hope things are going better for you.

Becky (in Indiana)


#9

You definitely aren’t making it worse, wish we had medical marijuana in Virginia.


#10

Hi! I read that you are a nurse & filed for disability. If you don’t mind I would love to pick your brain. I am also a nurse. I was diagnosed with rheumatoid arthritis in 2015 and did the injections weekly and all the medications daily then a couple months ago my rheumatologist said that I had fibromyalgia not rheumatoid arthritis. My nurse buddies were asking why I wasn’t upset & looking for another specialist and my answer is she was the only Dr that gave me an answer to why I was in so much pain & why my labs were elevated x2 or more (even if that answer was wrong) I started to have days with little pain & my labs stabilized. If you don’t mind me asking questions I would appreciate it and if not it’s ok I totally understand. :blush:


#11

When i was in my 30 's my fibro was at its worse…i wondered about wheelchairs, but i studied and learned ways to self help…and did much better, until my vit d levels crashed one winter…

So you appear young, and i think its important to know that you can feel better.

I am medication sensitive, i get some help from my doctor but also have had to learn what works for me…

Keep moving as much as you can, we get way too stiff if we do not…stretching is a must !

Explore supplements…magnesium and malic acid help many

Curamin helps me also

Heat helps most, but in really strong pains, ice can tone it down…thats a trial and error thing


#12

Thank you! Yes it’s pretry much trial and error. But I forget what works and what doesn’t lol. I just finished tell my husband yesterday I needed to get me a planner so I can make notes so I can remember important day to day info. I’m 42 and my pain is worse now. But my stress at home has increased. So I am thinking that is why I have had a increase in pain & brain fog.
I have been using flexoril lately and have noticed that using that and voltaren gel helps. But I will try some yoga & some stretching in the mornings to wake up my body. I really hate taking meds. I take them as last resort but I make sure to take my lyrica & cymbalta religiously. I will look into the supplements you mentioned too. I bought me some tumeric also. A neurologist I work with suggested using it due to it helping so many ailments. Thanks for your insight I appreciate it.


#13

Also at what point did you decide to hang up your stethoscope? I love being a nurse, I love where I work, my patients & coworkers. But sometimes it’s just so hard to get out of bed from the fatigue & the pain. And when I do make myself get up I’m dragging all day. I take 5hr energy shots & espresso shots & even caffeine tablets to stay awake but they are a short term bandaid. Very short term. And I have to write everything down bc if not I will forget. I work thru the pain also, I won’t take my tramadol or flexoril during my work day. I will be working on my FMLA forms this week for my fibro & for my husband ( Sometimes I miss work bc of him he is a disabled Vet) Thanks for your insight…:slight_smile: