Should I care?

[andreapo]

May i just chip in...i have had fibro for 10 years..the first 7 i wasnt able to work and had about say 1 hours of walking in me on a good day ...maybe more if i rested and then pottered about later and could do housework in bouts of about 30 minutes at a time resting to reduce the pain in between....and in total on my very best days i could go out for about 3 or 4 hours but much of that was sitting in the car with the seat covered in a duvet to make it comfortable as even sitting my bottom back and legs arms would ache and burn sometimes terribly..my partner did all the driving as i had to give up 2 years into fibro. The repetitive movement on my feet legs doing the pedals and arms turning the steering wheel would stir up the pain the longer i was out ..so after 20 minutes i was done and had to get home ..and lay down with hot water bottles to try and get the pain back down to a manageable level.

I didnt just give in...i decided i would walk daily instead which i did for about 40 minutes either to my local shop or out with my partner.

Over the years new symptoms added the party interstitial cystitis, vulvodynia, tmj disorder migraines tinnitus..all randomly and sometimes lasted days sometimes months and tinnitus very loud was permanent since 2009...sometimes it reduces in volume to something most people think of as tinnitus as in buzzing and ringing but the loud is like a jet engine although i have trained myself to ignore it pretty well ..its way louder than almost full volume tv.

Then almost 3 years ago i had a big emotional upset and long story short my fibro went down hill rapidly and all the intermitant symptoms became daily and permanent.

I could not walk barely to the kitchen or stand long enough to make a drink or easy meal...sitting in a soft arm chair not only is extremely painful all over but i didnt have the strength to sit up for long...and migraines face and jaw pain so bad eating and talking became very difficult and still are...i use ice after a chat on the phone and have to go lay down in silence and quiet to try and manage it.

Some days i can get up for an hour or 2 or a bit longer and get a few little jobs done, others i feel so weak and ill i can hardly raise my head off the pillow and put off brushing my teeth as it is such an effort and standing for few minutes is agony....lol i do it though I'm just saying this is how it is....

I was the most dynamic career girl, loved physical activity, house proud, adventurous holidays, took great care of my health and appearance, love gardening my half acre garden....but i speak the absolute truth as to my current condition...which is house bound and often bed bound.

Its not a case of trying harder ..i was already doing that for 7 years and still enjoyed my life with all the symptoms and pain i had and found a way to manage enough to have some good days or hours...but working would not have been possible.

So for some of us sadly things just get so bad nothing much helps..even if the pain is tolerable I don't have strength to do much and typing and emailing a friend or a call with friends is my main socializing...sometimes im to exhausted and my hands hurt to much to do that for long.

Its almost like another level of fibro that even i would not have understood before this downturn..except i did get odd spells like it but i would return to a level where i could be up and achieve things albeit not at the rate of a healthy person.

It doesnt mean we are negative it just means after years like it its hard to be hopeful..so i can see how perhaps Catherine feels.

I never drink so i cant comment on that its just not on my radar and i do so hope Catherine your health does improve....if possible try a little exercise like you say around the house and maybe in the summer venture into the garden.

My legs actually seize the more i walk..like the muscles and joints get tighter and feel like they are grinding together to point i cant move..it's not something you can push through as the more you push the tendons and muscles react like they are injured and then i cant even weight bear....i don't know how else to explain and wonder if anyone elses body reacts this badly.

Ive had a broken foot and i can honestly say its the same as the pain of trying to walk on my broken foot just in most of my body most of the time...and even doing nothing the same pain...so im constantly trying to get off my own body and the parts taking my weight in bed or in a chair or standing.

I only weigh 126 lbs so not heavy and 5 feet 5 inches.

I do laps around my large living room when i can on any better days..one minute i can do a few...next i am hobbling and almost collapsing..its not a choice and its not from not trying.

I know the difference because my fibro was not mild for 1st 7 years but i wasn't stuck like this 24/7....just an insight for you guys that are doing better.

Sending you warm hugs and an open ear. andee

 

[diamond]

Just a little aside..LOLi have just seen how long the above post looked in print! Sorry guys.

But also to throw another viewpoint in the ring.. for some one young and single who has this condition at any level and worse if at the severe end of the spectrum it must be an even greater burden...no reliable partner to share the ups and downs with..for company when we cant go out..yes we feel a burden and yes its hard for them too..but if in a long marriage or relationship you have daily companionship and a hug to keep you going...even if it is peppered with less understanding some of the time.

I know this varies too as i havent always had good understanding or support from family either but alone with no income reliant on parents is not a comfortable position...and many of us at least have had careers or raised a family while still healthy..not all ofcourse everyones situation is different...just dont want Catherine to feel that we dont understand her plight or misery...i'm miserable too pretty often these days and have to look hard and appeciate small things like a cosy bed, holding my partners hand or my grown up son ringing me or sending news about his life...or a squirrel stealing the bird food from the bird table that makes me smile.

If you are 21 you are looking for way more out of life than these things and must feel even more powerless..powerless and stuck in pain is awful position to feel you are in!

One thing is true my down turn meant i was stuck in bed and long term in bed and inactive is very bad for fibro ..thats why i kept as active as possible for all those first 7/8 years regardless of the pan..so just another word of encouragement Catherine if at all possible do move as much as possible and maybe reach out and find a pain clinic that can offer emotional support and maybe a way to meet people with fibro/cfs or any other chronic pain condition that maybe you could befriend.

Friendship is a great motivator to maybe try and do a little more with someone else who totally understands....i wish you soooo much luck.

GENTLE HUGS x

 

[Marvis]

Thank you Willow. This disease affects everyone differently and we need to approach each other with an open mind and compassion. My fibro is mild compared to some on here. I'm not sure how I would have handled this in my tumultuous 20's - dealing with endometriosis and mono was hard enough.

 

[medicmurphy]

Dear Forum Members,

Much to my sadness, I am getting the impression that some may feel my posts to KatherineTheGreat are being perceived as unkind. Never would I have wanted to hurt anyone, especially a young woman who is clearly in a vulnerable state and a fellow suffer of this syndrome.

I read and re read her posts and I felt alarmed that such a young lady as her has essentially given up in some way. Prior to her Fibro diagnosis she appears to have undergone some trauma leading to a PTSD diagnosis and treatment. She describes her youth as a sickly one. For the first year or so following diagnosis she manages her Fibromyagia and lives a relatively normal and active life. So, in a short 3 years she has tried every possible med and treatment available for Fibro patients, including several specialists and a top pain specialist, who, according to her feels she didn't give it enough time to work. She also states that it takes a lot of alcohol to mask her symptoms. She also decided opioids will work.

When I read such things coming from a 21 year old I wonder if more is involved. Yes, Fibro is horrendous and robs us of our quality of life. Like many of us we have other health issues associated with Fibro which exacerbates everything. It is clear that poor Katherine has a full plate which includes a mental health component. She says she stopped all treatment 6 months ago, stopped going to her therapist, called all medical professionals incompetent etc. Such statements not only reveals her frustration but also shows some part has given up. Now she stays at home or in bed, only walking up and down her hallway for exersize. In addition, to more or less abruptly discontinuing antidepressants can cause rebound depression and anxiety. It is quite dangerous.

I was trying to encourage her to rally and not give up. I truly feel that given the short time frame she describes, she did not give meds or other treatment enough time so by pointing this out perhaps she can reconsider another go. The alternative is, a 21 year old living a housebound life. What a sad future. It is apparent someone who loves her encouraged her to continue seeking help. Her opening sentence says this yet her attitude reveals scepticism. Again, I can understand this but it also shows her sense of futility.

I apologize to all and to Katherine if I offended her and anyone else. I was trying to be honest with her as well as asking she not give up. Her youth is indeed an ally. Perhaps her options may be different than healthier 21 year olds but she can have a future. I just wanted to point this out along with the dangers of long term opioid use if that's where she thinks the answer lie. Young people can fail to look long term. Us older folks know this.

I know this forum is designed to encourage and show compassion, empathy and sympathy. Sometimes we need to show one another what we still have going for us as it is easy to focus so much on the negative. This was my intention with Katherine. I guess in all my years working in medicine I saw red flags indicating that this young women has more than Fibro rearing its ugly head. I was NOT accusing her of any addiction issues, alcohol or opioids. Do I think it could be a potential problem? Yes. But I think this could be a very real problem for anyone living and coping with chronic pain or illness. We can all fall victim if we don't keep our wits about us.

So, let me apologize again. I write these words with sincerity. Thank you for allowing me to to participate in this forum. Last thing I wanted to do was offend anyone.

Sincerely,
Debra

 

[Marvis]

Thanks Debra. Thanks for clarifying that. I didn't think you were being unkind, just very honest, and didn't quite get that you were trying to rally her, more that you were worried about addiction. Always tricky online to make your meaning clear - I've fallen foul of that often enough. I wasn't pushing back at you with my post, just making sure we didn't lose Catherine. I, too, am concerned about her giving up so soon -- hoping she finds a doc that she can at least trust to talk to and perhaps go back to square one and work with meds slowly and carefully. looking forward to continued conversations.

 

[diamond]

Same here medicmurphy no offence taken..we all have an opinion..that's the point of the forum and yours is also valuable and very welcome.

I just didn't want to loose Catherine when she is reaching out and feeling so lost and desperate.

I hope she comes back to us as maybe this is her only avenue for support and social interaction right now and people can get pretty despairing in the darkest times with fibro.

 

[Hippie]

Catherine,
I was diagnosed with Fibro when I was 19. I went from being an A student, working part-time, active in sports, lot of bands and I was social. My "last" year of high school things began to drop one by one. I remember I had an air mattress in a spare locker so I could nap during spares, or breaks during play rehearsal. That was in the fall of 2002. One by one things dropped, sports, band(I couldn't get enough air to rock my trumpet), my job (I would forget I was helping a customer). By April 2003 I could only make it to school about once a week to hand in assignments and write tests. I was still pushing and trying to get it done because that was what you were supposed to do and what I always had done. Then the doctors started, tests and medication and telling me I was depressed not chronically fatigued and in pain.
2004 I stopped treating my condition like a job and my endurance and concentration slowly started increasing. 2005 I finally finished high school, and started university courses one at a time. Winter semester 2006 I took a full course load then dropped out of university to go to college so I could get a job. I somehow managed to get through a challenging course load 2006-2009 and worked full time for 2 years before I relapsed. I was off work for a year and a half before I was back to working full time. I've been off again now since July 2016.

The thing that I have noticed for myself is that before I crash I am super busy. Once I crash I am trying to regulate sleep, go to physio, diet, go to the doctor, try medications that make me feel worse. I feel where you are coming from in your question if you should give up. I feel like you should give up trying so hard to be better, at least that's what I find helps me. Instead listen to your body, do what you know makes you feel a little better(and doesn't exacerbate your fibro). I find the search for health exhausting.
How I've gotten back functionality in the past is being kind to myself. Not stressing out about all the things I should be doing or looking into or what drugs I should be taking. Finding activities that I enjoy that I can still do(it can be challenging), pacing my activities (one thing in a day to start is probably enough), gentle exercise(don't push yourself if you are having a bad day) I find it helpful to keep track of exercise so when I'm in horrible pain the next day/week I know not to do that much again. (My memory is shit so I can't remember what was yesterday vs last week vs a dream or if anything happened at all).

Long story short you can burn out from the full time job of trying to help yourself out of fibro. Give yourself a break for now. I hope you find that the break rejuvenates you a bit.

I hope this helps, just know that you aren't alone.

 

[CatherineTheGreat]

Again, thanks for the replies. I actually wrote a whole little thing about a week ago in response to willow's (lovely) posts but the site crashed and I couldn't be bothered to type it again. I also haven't been on my computer lately due to parents being out of town so I had to do a couple things around the house and I was too tired/sore to use it for a little while. Anyway...

Thanks, Debra, for the clarity. I wasn't so much offended/hurt/angry/whatever more that I wanted mostly just really wanted to dispel the notion that I have a substance abuse issue because I don't. I've run into professionals who spend all their time focusing on imagined issues like that because of off the cuff remarks rather than on problems I actually have. I only drink occasionally, like 3-4 times a month. I can see how my posts might give the impression that I'm rather depressed, though I don't think I am anymore. If I am, then I used to be a lot worse, and my emotional stability actually improved dramatically when I stopped taking my depression meds. I have a kind of gallows humor about all the shitty things that happen to me so I say things that might sound really bad or indicate despair but my attitude is more ambivalence and laughter than sadness, I guess.

Thanks, willow, for sharing. As I said I wrote a response, but the site crashed. I can definitely relate in a lot of ways. About a year ago one of my sisters caused a big ruckus with a bunch of bull**** (Am I allowed to curse on here?) and made up stuff and the short story is I got kicked out and had to move across the country and get a job and apartment. I had been on an upswing for a while, my symptoms were bad, but much more manageable than usual, so I actually managed to get the ball rolling with all that for a little while. Of course, I was super upset and stressed, and I ended up so sick from the stress that I literally couldn't walk more than 10 feet without falling over. Things got cleared up with my parents and I moved back home, but I haven't really recovered from that. Right now I just focus on minimizing my stress as much as possible and that's helped me get somewhat better. About 4 months ago I tried adding a light walking routine (pacing in the hall for 20 minutes a day) and I stuck with it for a month but it just made me so much sicker.

Thanks, Hippie. I also had things sort of fall like dominoes. I want to go back to class, and if I can get it manageable I'd like to take one course at my local college at a time. I'd been doing college courses in lieu of high school so I still don't even have my diploma. However, every time I have a couple weeks where I'm well enough and think "Cool, I can take a class next quarter," I hit a wall of reality the next week where I'm unable to get out of bed for more than 5 minutes. I've definitely found some improvement by not spending all my time getting treatment that has never worked. That's pretty much I guess the point of my original post. If my treatment isn't working and the act of pursuing it makes me worse then why should I pursue it? Every time I tried something I'd just end up sicker and feeling defeated.

Anyway, I'm crazy foggy so I hope that was intelligible. I reread it but it's just words right now.

 

[diamond]

Yes Ive done replies then managed to loose them and dont have the oomph to start over..anyway thank you Catherine for contributing.

All emotions are welcome humour included ..sometimes its all we have even when a few minutes before or after we actually feel like crying!