TVCH FORUMS HOME . JOIN . FAN CLUBS . ABOUT US . CONTACT . CHAT  
Bomis   Quick Links   TOPICS . TREE-VIEW . SEARCH . HELP! . NEWS . PROFILE
Archive through October 03, 2005

The TVClubHouse: General Discussion ARCHIVES: 2006 Mar. ~ 2006 May: FIBROMYALGIA FORUM: Archive through October 03, 2005 users admin

Author Message
Mameblanche
Member

04-13-2005

Tuesday, August 30, 2005 - 5:36 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
I thought I'd share an article I wrote that was published 4 years ago. Hope it informs, and better yet, starts a lively discussion on the topic. :-)

COPING WITH FIBROMYALGIA

It’s disheartening being saddled with an illness that is often referred to as a ‘garbage-can’ syndrome by the medical community. I have Fibromyalgia, sometimes called fibro, sometimes FM. Let me cut to the chase - there is no cure. You know that run down, low energy, achy feeling you get when you come down with the flu. That’s me most days.
A few of the overall symptoms include chronic muscle pain, difficulty sleeping, constant fatigue, gastrointestinal complaints, and migraines. Some of the doozies are temperature sensitivity, and environmental sensitivity (to light, noise, odours, taste, and weather fluctuations.) My personal nemesis is a cognitive disorder commonly referred to as fibro-fog, which pops up mostly under stressful situations. Fibro-fog features frequent short-term memory lapses (doubly embarrassing in my line of work) and being easily overwhelmed. I’ve dubbed it cheese-brain, because I picture my memory as a piece of Swiss cheese, with holes in it.
Here is where the frustration comes into play. It took at least a couple of years before I found someone who could tell me what the constant pain and fatigue were all about. It seems like one third of the medical community completely discounts FM as a haven for hypochondriacs, and one third tend to dump their patients into this category when they are stumped, (ergo the garbage can nickname), while one third are truly knowledgeable about this complex syndrome. It’s difficult enough not feeling up to par most of the time, but to have something that often takes years to find a correct diagnosis, adds enormously to the misery.
One day, in the Fibromyalgia and Chronic Pain newsgroup, Iris Weverman, RPT, posted her reviews of several books on the subject, and indicated that her physiotherapy clinic was located in Toronto. I was lucky. This was the Internet and she could just as easily have been based in Katmandu. Her credentials include speaking engagements on the topics of Chronic Pain, Fibro, and Myofascial Pain Syndromes. At my first appointment, she immediately did the ‘tender point test’, (where you must have pain in at least 11 out of 18 specific sites on the body), which unfortunately I passed with flying colours.
Since this is mostly a diagnosis of exclusion, (meaning after everything else is ruled out, then chances are you have this) Fibromyalgia is often mistaken for illnesses with similar symptons. According to Weverman, one should picture the spokes of a wheel, one spoke representing FM, one for Chronic Fatigue Syndrome, one for Lupus, and one for Multiple Sclerosis. I know of someone who for years was told she had Chronic Fatigue Syndrome. They just discovered that she really has Multiple Sclerosis. It’s a frightening situation when you have so many illnesses that mirror one another.
Mind you, I’m not complaining. Over the past 4 years, since my diagnosis, I’ve grown accustomed to its vagaries, and have figured out how to live with it, on a truce-like basis, day to day. I ignore it and get on with life on my good days, and I coddle it with massage and the occasional painkiller on my really bad days. And truth to tell, some days it just pays to huddle under the covers, until I can regroup, and face the world, once again, re-energized.
I don’t mind fighting Fibro. But it’s exhausting fighting smug disbelief. Although according to Iris Weverman, while eight years ago it wasn’t unusual for her peers to discredit it, research is finally beginning to prove, unequivocally, that this ‘garbage can’ disease really does exist in and of itself. Saturday, May 12th, was Fibromyalgia Day. This is a giant step in a hopeful direction.
<END>


Pixieduster
Member

09-27-2004

Tuesday, August 30, 2005 - 5:54 pm   Edit Post Move Post Delete Post View Post Send Pixieduster a private message Print Post    
Congrats, Mame - you did it!

Mameblanche
Member

04-13-2005

Tuesday, August 30, 2005 - 6:08 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Laralyn, Itscarollee, Pixiedust, Dovez, Huk, Lurk, and all of you. Well you've gone and done it now. You've made me cry. Literally! I haven't written professionally since May 2001, and you made me understand that I've been wasting my, um, talent. There were a series of disappointments, and writing just wasn't fun anymore, so I found myself on sabatical as the years stretched on. Having reached you with my words, you reached me with yours. You have no idea how much you've done just by being here today and being you. All of you.

Pamy
Member

01-02-2002

Tuesday, August 30, 2005 - 7:16 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Thx Mame...I am going to print this out and read it...there are a few of us w/fibro here

Pamy
Member

01-02-2002

Tuesday, August 30, 2005 - 9:47 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Mame, great article!!! You really captured how I feel!

Mameblanche
Member

04-13-2005

Wednesday, August 31, 2005 - 12:47 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
No matter how, where, or why, one gets the answers one needs, what's important is to NEVER give up, or to RALLY yourself when you can, once you have given up. (I'm in the trying to rally myself stage about a number of things.)

Mameblanche
Member

04-13-2005

Wednesday, August 31, 2005 - 12:48 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Pamy so glad my article resonated with you. I hope it helps!

Mameblanche
Member

04-13-2005

Wednesday, August 31, 2005 - 2:49 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Hey everyone - my catscan results are in and things are looking good. :-)

Pamy
Member

01-02-2002

Wednesday, August 31, 2005 - 7:21 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Great news Mame!!! I am going to doc fri and hope to get to try Provigil, I hear it is helping ppl feel like doing normal stuff again.

I am immune to the pain killer i have now so I hope he will give me something to try and see if it helps

I know I need to excercise but it is all I can do to find energy to go to wk let alone excercise..the most I do is walk 20 min a day

Mameblanche
Member

04-13-2005

Wednesday, August 31, 2005 - 10:30 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Thanks, much appreciated. Here's the scoop. I had a partial hysterectomy last summer (June) due to suffering for about 5 years with a fibroid. For 6 months after the surgery, I was a very 'happy camper' lost weight, had energy, great self-esteem. Anyhow, I began to feel uncomfortable around December, and discovered through ultrasound that I had a (benign) cyst, replacing the fibroid, (on/near my left ovary) due to scarring from the surgery. Sigh. Anyhow, my gyno was reluctant to do anything about this, and send me to an internist/surgeon, basically hoping my discomfort wasn't a gyno problem. In April, my 2nd ultrasound came back without detecting the cyst. (not good news when I'm still experiencing discomfort.) So I insisted on tracking down this sucker, (here one min gone the next?!) Ergo, the catscan. That has shown the cyst (again) and he's sent me back to to the gyno. So basically I am at square one... but at least I am not losing my mind. It is there, and now they have to do something about it. Or not. As I said, my gyno is reluctant to deal with this. Why he is so skittish, is another story. ANyhow, hope this makes sense.


Mameblanche
Member

04-13-2005

Wednesday, August 31, 2005 - 10:31 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Pamy, did you hear about the Provigil through the L.A. Times article? Cuz I wasn't able to access it with the online link. I am dying to read it. Best of luck at the doc's... and keep me posted. :-)

Pamy
Member

01-02-2002

Wednesday, August 31, 2005 - 11:39 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
I have been hearing about it for months, the LA times article just pushed me to make the appt to ck wiht doc.

I only have the last page of that article...pm me if you want me to fax it to you

Williesmom
Member

08-19-2005

Monday, September 26, 2005 - 2:49 pm   Edit Post Move Post Delete Post View Post Send Williesmom a private message Print Post    
I was diagnosed with FM about 7 years ago. I tried the Provigil but, it didn't work for me because of sleep issues. I have been on trazadone for years and recently had to be changed from 50 mgs to 100. Sleep is always my big issue. I take vicodin for pain and naprosyn for all the inflammation. I can't walk more than 20 or 30 feet until everything seizes up and I have to sit and rest for awhile. Rarely shop for fun anymore because of this. I always use the electric carts at the grocery store and Wal-mart.
There is a lady who comes once a week and cleans for me that is covered by DORS. I haven't gained weight but I sure don't lose any either and I need to. I have diabetes as well and have poor control of my blood sugar even though I am usually very careful.
Well thats my story and I hope to find friends here who understand what it is like dealing with this daily.

Pamy
Member

01-02-2002

Monday, September 26, 2005 - 6:18 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
I just got the provigil...i think it helps some.

I take 2 trazadone 25mg and it puts me right to sleep, i still wake up every 2-4 hrs but I can go bk to sleep.

I take Lorcet for pain...pretty much just keeps my pain to dull ache.

Willie, I am same way about walking/shopping..my back feels like its on fire after about 1 hr

It is just nice to talk with ppl that have it and understand....my DH is not very sympathetic...I think it's cuz he can't 'see' why I hurt

Azriel
Member

08-01-2000

Monday, September 26, 2005 - 10:14 pm   Edit Post Move Post Delete Post View Post Send Azriel a private message Print Post    
Pamy, I know what you mean. I get irritated with my brothers because they act like all my mom needs is a little more exercise. She can't freaking exercise more because she's in freaking pain, you morons! It's not the lack of exercise that caused the pain, it's the pain that has caused the lack of exercise. Just trying to lift her arm above her head causes excruciating pain for her. Just taking a few steps is agony.

My mom really tries so hard to get around with just her walker. She will only use a wheelchair if you force her to use it as in telling her, 'I'm just going to walk away and leave you behind me if you don't sit in the damn wheelchair.'

It makes me so mad that she has this disease that makes her feel so guilty! It sucks to see her constantly pushing herself beyond the limits she should just because she doesn't want someone else to think she is whining or lazy.

Pamy
Member

01-02-2002

Monday, September 26, 2005 - 11:26 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Az, you help her by understanding how she feels. Sometimes that helps more than meds!

Mameblanche
Member

04-13-2005

Monday, September 26, 2005 - 11:45 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
My fibrofog/cheesebrain/brainfarts are so bad that I hate when I can't remember basic stuff like my friends names on the spur of the moment! Yep, that happened today. But then I had an epiphany. My friend, who I hadn't spoken to in months and I were in a conference call and I couldn't remember her name for a loooooooong moment. Later on, I appologized to her as I could tell she was somewhat hurt. I said if someone with a broken arm couldn't shake your hand you wouldn't feel snubbed would you and she said no. I said its the same thing, because with my fibro the memory area of my brain short-circuits at the most embarassing times.
And I get so impatient with my mom who is very elderly and has confusion, is repetitive, and her short-term memory is shot. Sigh. I should be more understanding, but on the one hand it scares me, as I am already on that slippery slope, and also the stress and pressure to remember HER stuff for her. I am VERY micromanaging (anal) about where I put things around the house. I've got dh trained, but mom's another story. She puts stuff wherever, and then asks ME where to find it. ACK! I feel soooo horrible about my impatience.

Mameblanche
Member

04-13-2005

Monday, September 26, 2005 - 11:50 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
HUGS {{{williesmom}}} You are so in the right place, and certainly the right thread topic. We help each other by sharing ideas, experiences, and a little venting. Welcome! :-)

Williesmom
Member

08-19-2005

Tuesday, September 27, 2005 - 8:57 am   Edit Post Move Post Delete Post View Post Send Williesmom a private message Print Post    
Thanks so much for the warm welcome. I want everyone here to know I am always willing to listen so feel free to PM and I will write back. I spend a lot of time on the PC cause it is my link to the world I don't travel too much anymore.

Kstme
Member

08-14-2000

Tuesday, September 27, 2005 - 2:45 pm   Edit Post Move Post Delete Post View Post Send Kstme a private message Print Post    
I am so sorry so many of us have this disease. {{{{{{}}}}}

You know what? I really truly hate Fibro! I hate the brainfarts, the total lack of energy, the trying so hard to do things only to fall flat on my face when I should be looking up! I hate the pain and the burning. I hate that my legs feel like jelly after two steps! I hate that my shoulders and neck hurt too much to hold my head upright! I hate that my hips continually feel like someone is twisting a knife through them! I hate that my hands won't let me type as much as I would like! I really, really hate Fibro/Lupus! Had to add the Lupus cause it screwed up my eyes. I hate that my friends don't understand my illness, so I don't/won't talk to them about it! I hate that I can't take any meds for this horribly crippling disease!

OK, now I feel better! Just needed to vent for a few minutes. Been in a major attack for about a month and 'I hate it!' Since my mother used to say, 'Don't say you hate something, say you dislike it,' change all those hates to dislikes if you chose!

Twenty years ago, August, since I was first dx'd with this disease and the Lupus. blech! I am so done dealing with it!

Pamy
Member

01-02-2002

Tuesday, September 27, 2005 - 8:31 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
WOW Kstme..it musta been really hard to deal with 20 yrs ago since I have read Docs are just now admitting there is FM!

Hugs to all us with f-ing Fibro!!

Kstme
Member

08-14-2000

Wednesday, September 28, 2005 - 10:25 am   Edit Post Move Post Delete Post View Post Send Kstme a private message Print Post    
Pamy...what I should have said was that the Lupus was dx'd 20 years ago. Sorry...

I have had the Fibro about as long, though and was given an 'official' dx about 6 years ago. It is very hard to deal with because I can't take meds for either disease.

Right now, I am sick, I am exhausted, I am at the end of my rope and I have to deal with the new puppy while Thekid is at work. I am in tears every day and on the verge of them every moment. I have rarely let these two diseases get the best of me, but this episode has me so beaten up, I feel like I'm going through the rinse cycle without stopping. There is no part of my body that isn't burning or in pain or both. When Mame talked about forgetting her friend's name, I have been in 'that' Fibrofog for over three weeks and it happens too often! I really get annoyed with myself when I should be able to verbalize and make sense, but I don't. Bless my family, for they don't even correct me nor remind me that I've said the same thing 4 times before. I am fed-up, I am disillusioned, I want to be well and I don't know if or when I'll bounce back this time.

Sorry, I'm am not usually this down.

Pamy
Member

01-02-2002

Wednesday, September 28, 2005 - 7:22 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Kstme, that is what we are here for, to support each other. I hope you feel a little better and that next week is a better one for you!

Mameblanche
Member

04-13-2005

Sunday, October 02, 2005 - 1:40 am   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
(((KSTME))), I promise that this too shall pass. I hate to sound like a fortune cookie, but I know from experience that this sucker (FM) is cyclical.

I've been having a REALLY bad week, and emotionally I'm feeling better today, cuz the folks here have really rallied round the flagpole on my behalf today. :-)

Physically I feel like Sh*t. But I also know that there are some things I can do. I could book a massage, for one thing. Or I could use the heating pads or ice packs. (Today I need soothing heat instead of numbing ice!) Its unfortunate that you can't take muscle relaxants or painkillers, but hey, they make me really, IRRITABLE (grrrrrrr) the next day, so I try to avoid them anyways.

I don't have lupus, but I do have a laundry list of other physical ailments, and have absolutely been diagnosed with chronic pain. So I can empathise with your frustrations.

Oh, and sitting on the bus, next to a dear, dear friend, I TOTALLY and COMPLETELY forgot her name. And we'd been at her house for tea the week before! WE were on our way to see another friend's work at an art gallery. (Yep, the artist is the gal whose name I forgot in the phonecall I mentioned.) Luckily my other friend, the one on the bus, is familiar with my brainfarts, so she took it in stride, chuckling while I racked my brain to remember her name. She knew I'd remember it, she was just curious how long it would take me. Which after a few very loooooooooong moments, I did.

I hate this too, but I try to educate people, to forewarn them this can and probably will happen. So like my friend, they at least are not offended. Because that's the worst part for me... if their feelingns are hurt. Nope, I lie. The worst part is feeling that although they understand they might thing I'm stupid. But if that's the case, they aren't really my friend, are they?

Hope this helps, sorry its so longwinded. It's 3:30 in the morning here, I gotta get to bed. Goodnight all my fibropals.

Kstme
Member

08-14-2000

Monday, October 03, 2005 - 3:59 pm   Edit Post Move Post Delete Post View Post Send Kstme a private message Print Post    
Thanks Pamy, {{{{}}}}!

Mame, I used to try to educate people regarding the diseases I have, but I don't bother anymore. For many, many years, I would say I was sick/didn't feel well. I would go through the whole thing of them asking what's wrong...the blah blah of not being able to tell them. I would be somewhere and know I had to leave because I was too tired to continue what I was doing. I was 20 years old and had to take naps. When I was pregnant with Thekid, at 29, I almost lost her because of the diseases that hadn't been named. When I was finally dx'd, in my late 30's, so many of my close friends went, 'Ah! You must be sick cause you finally have a name for it!' <ok, it wasn't quite that bad, but pretty dang close>

Thekid's Godmother read a bunch of 'old' literature regarding Lupus and told Thekid, she was 8, that if she made me angry I would die! To this day, it is very difficult for Thekid and I to argue with each other even though we both know it's alright to be mad about things. Right now, her new puppy is a direct result of why I am having a MAJOR attack. I finally wrote her a long letter explaining 'what' was going on when she was work and why I am so stressed. If I'd tried to tell her, I could not have handled her sadness.

The pup will get older, things will settle back down and I will get better with time and rest. Only those closest to me, in real life, know how sick I've been. The DH and I have a vacation planned in less than two weeks and I'm so terrified I won't be able to keep up. He's an amazing person and does understand all the physical problems I have.

Like you, the Chronic Pain does not go away. I have an incredibly high tolerance to pain, thankfully. In the 'whenever' future, I am facing two or three more surgeries that I am putting off as long as possible. Two of the three surgeries will have long (two months+) recovery times. After 14 surgeries, I'm just not ready to face anymore. I am 58 and feel 158.

Right now, I am feeling very defeated. I get so tired of feeling like crap ALL THE TIME! Have any of us woken without pain since the year 1 AD? That would be a wonderful thing!

Sorry, I think I've just rambled my way to a nap! Hugs everyone and Mame, I want you to feel better SOON!