Medical conditions--St. Mungo's Support Group, Fibro, Coeliac, Chron's, Psoriasis, Insomnia, etc. |
 May 10 2006, 12:41 PM
Post
#1
|
|
Cauldron Bottom Measurer  Posts: 128 Joined: 4:04pm July 8, 2005 Location: Carnegie Hall...eventually.  |
I was posting a reply in MonieLou's "Ouch Moments" thread, and anyone who has Fibromyalgia/Chronic Fatigue Syndrome knows that (usually physically) traumatic events are believed to be a major trigger for Fibromyalgia, which is a chronic pain disorder. So it got me thinking...I'm just curious as to whether or not anyone else in the forum has to deal with these chronic pain conditions on a day-to-day basis, whether it's you yourself, a family member, friend, work associate, whatever.
I've been slightly meloncholy the last few days because my Fibromyalgia has been affecting my life more and more recently, and it's frustrating, to say the least. I'm having my 26th birthday tomorrow, and yeah, I usually get like this right around my birthday because every year I'm reminded of how young I still am, and at the same time, how much there is that I can't do because of my physical condition. I was diagnosed at age 15, after 5 years of unexplained aches and pains. I can remember I used to get pain radiating from my lower back down through my hips and legs so badly that I couldn't walk. I would just lie with my head in my mom's lap and sob for hours until I fell asleep. That was when it first started. After I got the diagnosis, it was almost a relief. I was able to do some physical therapy at first, and every now and then I would get injections of Cortizone at key points throughout my body...shoulders, knees, etc., but I also had periods where the symptoms would almost totally go away. Guess that's why they call it a "syndrome," but they're not going away now...in fact, the last few years have been really bad. I even had to take off 2 years at school because I just couldn't keep up physically. It wasn't just the pain, it was the exhaustion, too. Tomorrow, I'll be 26 years old...still trying to finish school, but even when I finish...I'm a Music Education major...I'm genuinely afraid of what will happen if/when I get a teaching position. If I can't keep up with a class schedule now, how can I expect it to be any better when I have to teach? How am I going to keep up with all those kids? I have days where I literally can't get out of bed without help. This morning was one of those, as a matter of fact, and I guess it just really freaked me out. They tell you that Fibromyalgia/CFS is not progressive, but mine is definitely getting worse, and frankly, I'm kind of scared. I'm sorry to whine, guys, really. I'm just having a really bad "Pain Day," as I call them, and like I said, it's my birthday tomorrow, so every year around my birthday, especially if I'm feeling really bad, I just get...worried, I guess. I'm just wondering if any of you have this problem or know anyone who does, and if so, how do you cope? What do you do? Do you have any advice for me? I try really hard to pace myself, but I'm finding it more and more difficult to slow my life down to accommodate my physical limitations. I'd really appreciate any input you could give me. If you even just want to vent, like me, I'm okay with that, too, LOL! -------------------- "It is our choices, Harry, that show what we truly are, far more than our abilities."
 |
 |
  
 
|
|
May 10 2006, 06:11 PM
Post
#2
|
|
Flesh-Eating-Slug Catcher Posts: 195 Joined: 3:33pm April 18, 2006 Location: Nottingham, UK |
Oh sweetheart
 My dad has fibromyalgia, so I know where you're coming from. I'm sure nobody who's ever had or known anyone who's had FM would say you're whining, there are people who "whine" about far less than a chronic pain condition. I'd say as much as you can go for the teaching thing, perhaps you could teach part time if you're not so sure you could do the fulltime teaching schedule? (I'm waiting on the results of my post-16 PGCE (postgraduate certificate of education) application so I share your desire to be a teacher/lecturer) & GOOD LUCK!Also, best wishes for your birthday. 
This post has been edited by Tori B: May 10 2006, 06:11 PM -------------------- Per ardua ad astra.
|
|
|
|
|
May 10 2006, 06:42 PM
Post
#3
|
|
Slug and Jiggers' Apothecary Apprentice Posts: 1,423 Joined: 5:35am March 26, 2005 Location: Hogwarts-my idea of Heaven |
I suffer from chronic pain and it sucks!!! it has destroyed my marriage and my whole lifestyle as well. i can barely function on day to day chores let alone work. I was sacked from my job because of it(it is a work injury) I think you're doing a fantastic job living with it day to day.Anyone who lives with chronic pain is doing a great job just living life.
|
|
|
|
|
May 11 2006, 11:56 AM
Post
#4
|
|
Junior Dishwasher at The Leaky Cauldron Posts: 607 Joined: 10:02am March 25, 2006 Location: Bottom of the Black Lake |
I was diagnosed with Rheumatoid arthritis when I was 14, and fibromyalgia some 25 years later, so I've lived with chronic pain and fatigue my entire life. I now am also "blessed" with osteoarthritis and am looking forward to having both knees and hips replaced sometime in the not-too-distant future. They won't do it now because my general health is "too unstable."
To make matters worse, I had a relatively (in my opinion) case of the flu earlier this year and wound up home in bed for nearly 2 months with Post-Viral Asthenia, which is similar to CFS in its symptoms. I was sleeping 22 hours a day, lost 20 lb in less than a month, and only recently went back to work full-time. And now I'm home sick again because there is "a bug" going around my office and I have no immunity to anything at the moment. The only benefit I can see is that (1) I'm still 20 lb lighter and (2) my knees don't ache as much from the arthritis since I didn't do much walking for a number of weeks. I find that both accupuncture and regular chiropractic care do help make the pain and disability more managable. I did have to retired from my career of choice (nursing) some years ago because I couldn't keep up with the physical demands of the job. At that time, I was advised to opt for permanent disability, but I love working and want to keep working as long as possible. Just have to have a desk job now People who have never dealt with long-term chronic (i.e. constant) pain and fatigue tend to be very unsympathetic. Those who have an idea what I've lived with for the past 40+ years are amazed I manage to function in society as well as I do. |
|
|
|
|
May 11 2006, 02:28 PM
Post
#5
|
|
Shopping for a New Firebolt Posts: 807 Joined: 9:57pm July 15, 2005 Location: translating parseltongue for worried zookeepers |
I used to have in my signature "Fibromyalgia is mugglespeak for the Cruciatus Curse." I was diagnosed with FMS/CFS in November of 2004, at age 31. My mother and grandmother both have it, as did my late aunt. I cringe to think that my own daughter has a 50/50 chance of developing it as well.
I have been having very severe flareup days lately- and they really do skew your perspective. It's very hard to be positive when you hurt all the time, and people get tired of hearing about it very quickly. I've had everything from "you just need to be more positive- it's mind over matter!" to "you just don't exercise enough- you have to push through the pain." I've even been accused of faking the pain to get out of having to go to work. (we had decided that i would stay at home to raise our daughter way before i was diagnosed! as if it is "their" business, anyway) my advice, or rather, words based on my own experience, is that, when ever you can, get out and do everything you possibly can when you can. go rollerblading, even if it is just for one block, for one day. go ride the kiddie slides at the water park. tap dance, even if it's just in your own kitchen, anything, anything at all to remind yourself that you have the syndrome, it does not have you. my motto is "if i am going to hurt while i'm living, i'm gonna live while i'm hurting." i can't do everything i want all of the time, not by a long shot, but i fight hard for every good day that i get, and i don't waste them. soloist- i hope you have had a good birthday and get some pain relief. give yourself every hug you deserve.  -------------------- |
|
|
|
|
May 11 2006, 03:42 PM
Post
#6
|
|
|
Getting Fitted for New Dress Robes Posts: 42 Joined: 9:05am May 6, 2006 Location: ireland |
firstly, here's wishing you a very happy birthday, and hoping it's a better day for you.
I have Fibromyalgia too, and a bunch of other joint/muscle things, and was first diagnosed at 21 (now 33) - also a musician, but I don't play any more. My health story won't cheer you up, so I'll just drift over that for now. I am convinced that the most important thing is happiness. I have gotten used to (mostly) not getting anywhere very quickly,or very often, and apart from the ocasional wallow in the depths of self pity I stay up where I can cope, thinking about other things. If my arm hurts then it hurts, so I'll think about the cat. If my legs hurt too, then I'll sit down and think about the cat. If my neck is hurting and I can't think for being so tired, I go to bed and read GOF.  I can't work, and quite frankly do veryt much, but I can try and be a decent person, I can use my brain, when I'm not exhausted, and I can watch the wild birds feeding from inside. it's all relative. Sometimes our health is something we can't do anything about. However, there are things we can change in our lives. If there is someone you feel is a negative influence, ditch them. If you hate where you live, move. if you want to try getting a job, grab it. If you fancy writing a book, do it. Someone very wise and very sick said to me, when you wake in the morning, look into the mirror and say 'good morning, gorgeous.' Maybe your face looks ill, maybe your arms are in casts, but there will be some bit, like a toe or a nose, or maybe an ear. Look at that bit and say that is a gorgeous ear/toe/calf/fingernail. I may have such and such, but ye gads, have you ever seen such a lovely ear/etc... it sounds silly, but try it... it's nice to try something positive in the morning, even if you don't belive yourself at first. best of luck, and awful to read of so many feeling so ... (insert word that means not so great but is allowed on a 'family' forum...) m This post has been edited by morph: May 11 2006, 03:43 PM -------------------- it does not do to dwell on dreams and forget to live
Dumbledore |
|
|
|
|
May 11 2006, 03:43 PM
Post
#7
|
|
Quality Quidditch Supplies Test-Flyer Posts: 1,278 Joined: 2:30pm January 28, 2006 Location: 1725 Slough Ave., Scranton, PA  |
My mom has fibromyalgia, and she amazes me. She hardly ever lets on just how much pain she's in and is always there. I know it's really frustrating for her, though, because combined with a hypothyroid, she's put on weight and can't really get it off because it hurts to do a lot of the stuff she normally would try. She used to be a very talented athlete as well, so that drives her insane. She misses running a lot, I can tell.
-------------------- |
|
|
|
|
May 11 2006, 03:46 PM
Post
#8
|
|
|
Junior Dishwasher at The Leaky Cauldron Posts: 607 Joined: 10:02am March 25, 2006 Location: Bottom of the Black Lake |
QUOTE I used to have in my signature "Fibromyalgia is mugglespeak for the Cruciatus Curse." It's perfect! I couldn't agree with that more. I remained as active as I could as long as I could, whenever I could. It included swimming, cycling and even working out at a health club several time a week for many years. Complications over the past 8 or so years have now made me lucky to be able to swim on rare occasions (mainly because I no longer have access to a pool). I was so excited last weekend when I was able to run errands with a friend and still have enough energy to go out to dinner afterwards. Whether my being home in bed now is a results of that, or because of the change in the weather, or exposure to sick people at work, I have no way of knowing, but it sure felt good to be able to go out for an afternoon and do what "normal people" do for a change. |
|
|
|
|
May 11 2006, 03:57 PM
Post
#9
|
|
|
Assistant to Nicholas Flammel Posts: 2,201 Joined: 3:46pm July 20, 2005 Location: peering over at M's and Ari's cheat notes! |
Wow,
My mom at 65+*mumbles the rest* has" Fibro" as she affectional calls it, She also suffers with diabetes! It bothers me that she is not the "world wind" that she was as I grew up. Her nickname from the family was "Winds of War" I find it so interesting that those effected by Fibro also have other medical issuses. But the biggest thing I notice for her is Stress! If her stress level is up well then she is "done"- I do try to get her to excerise but it is only if she is not stressed. -------------------- spirited member of Vault
 717 RIP ~OPAST"I reject your reality and substitute my own"~Mythbusters |
|
|
|
|
May 11 2006, 05:12 PM
Post
#10
|
|
Leaky's Resident Bibliophile Posts: 8,279 Joined: 5:01pm April 18, 2005 Location: Finding Neverland.  |
I respect all of you, and your loved ones, for being able to handle this! I can't imagine being in constant pain. Pain and I don't get a long in the first place.
Is there anyway to 'cure' it? I know Soloist mentioned shots, but she never said if it was a cure (and I'm guessing its not because she still feels pain). Happy birthday, Soloist!! -------------------- "I know who Harry Potter is. I just don't know who the other two are. Himmie and Roland?"
"No, Grandma, Ron and Hermione." |
|
|
|
