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purplediane posted:
thanks for all who responded to my poll about working. it heartens me to see that the majority do not. the one lady that responded about needing to be around people i understand your need to work. i don't have that need. in fact that's kinda how i lost my job, freaking out around people and machinery. long story no one wants to hear. it's just me and my dog in the senior mobile home park. i will tell you, though, some of these seniors really get me off my oh poor me stool and up and moving around. they are so old with so many physical problems and difficulties moving around. some can't walk without aid of a walker. this is just some. i am 54 and they are 87 so i have good times ahead (just kidding). many of the people are in their 60's and 70's, some still have jobs. i have no desire to work or to talk to people, though i do have a few old people friends. one lady really keeps me positive. she has so many problems and is in such pain with no relief and keeps on going every day.
about the chills - i don't know if this is the same but when i'm feeling particularly stiff and swollen i'm often so cold i can't get warm. and it's the middle of summer in indiana here. my really bad days only last a couple of days and then i can get myself moving again. problem often is that i do too much that day and wind up not able to move again, so i really have to keep myself in check.
i'm sorry to be babbling so, but i have no one to talk to about this. i have a mom and sister nearby but i don't want to complain about pain around them, they always try to out do me. i have a wonderful internet friend. we met in germany 35 years ago, lost touch and recently found each other again. he's great to talk to, but again, i hate spending my time griping to him either. and i don't want to spend my time griping here either, but i'm new and there's so much i want to know about other people and their problems. when i first swelled up i thought my cankles were going to explode they hurt so bad. i too can't bend my fingers in the morning, and yes a nice hot hot shower does help loosen up those muscles. but then that feeling goes away, but it's enough to get you started. i'm glad i have the dog. without him there are some days i wouldn't even get out of bed and that's not a habit if want to get into. on the bad days i do nap a lot and get 15 or so hours sleep in a 24 hour cycle, but that's just a few days. ok. i should shut up now. i enjoy reading your posts and glad that many of you have just gone on with your life. i have other problems and this is just one more. such is life for some of us.
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missist responded:
Hi Diane (name right?)
I'm also 54. I have had this for almost 30 years.
I didn't find others to talk to about symptoms and remedies until just a couple/few months ago.

I think I've learned more and improved more in the past month than ever. There's so much accumulated wisdom in this group its amazing.

Some will tell you what to do for pain, what vitamins to take, how you should really pace yourself etc... its great!

Here's my thoughts-- from all I've been learning.
If you are getting 15 hours a day sleep-- there's maybe something you could do to get a little more energy.

Just very recently my own energy has improved to where I actually forgot to nap at all the past few days. I think I it is because I've started to use Vitamin B1 (thiamine) 500mg 2x a day. (*oh-- if you start new vitamins, otc meds or supplements be sure to tell your dr-- if not right away-- at least write them down so you can tell them when you see them.)

Mimi is always saying to get your vitamin D checked-- totally agree! I had mine checked a few years ago, it was low and I have supplemented it ever since--and it really helped my overall pain & depression level.

About those sweet ladies that outdo you-- LOL-- you're gonna have to learn to grin and bear it. Although--I am more likely now to TELL them more about the details of my difficulties. I suffered in near silence for a long long time, and let bitter resentment grow because I knew I could never be as energetic or useful as those special gals in my life are. I found though as time went on-- my pain and chills lessened but my strength and other issues got even worse. So-- I always feel a lot older than I am. I was the one with the worst balance in my swimming exercise class last year--and the youngest by about 20 years or more. Talk about discouraging.

Anyhow-- you just need to be your best YOU not them. I'm a Christian and so I think in those terms usually-- just a heads up-- I know there's a good reason for all the bible verses about not envying or wishing you were someone else-- it is just not a useful thing to do. You will feel worse and they won't be any less fabulous.

Another thing I do -- on that topic is pray. I cannot be consistent with everything in life--but I am working on bein 'constant' in prayer-- from a verse-- it means to keep praying on a regular basis. I write notes when i pray --and its greatly comforting and encouraging to begin to see answers to the prayers-- like solutions for my various health issues that slowly are trickling in.

I used to be super cold all the time. Now I mainly just need to have a little extra 'light' layers of clothes when I get up and in the evening sometimes. I light sweater vest that buttons in front and a pair of sweat pants are my morning garb in most seasons--summer not so much. (I live in South Carolina--so even I am warm here)

I have pretty stiff fingers too and my feet & ankles swell and my legs and hands/arms feel very stiff at times--other parts as well. One thing I know is a problem is I have high blood pressure so sometimes I need to tell the dr so he can look at the meds I take for that--diuretics especially-- cuz sometimes stiffness is actually edema.
I have to call mine tomorrow cuz the past week or so I'm getting a lot of foot/ankle swell ing--and that's not good.

I wear wrist guards with a metal support in them on both my hand/wrists when I sleep-- it helps with finger and hand pain. I also have some ratty old ones I use when I'm working on my artwork & other things.

I think what is encouraging is that if you start asking questions and just learning from others- you will figure out what combo of things works best for you.

Stick around!
Mary
 
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purplediane replied to missist's response:
thank you missist for much for your encouraging words. sometimes i feel i'm losing my mind with all the weirdness that happens with my body and in my head. i have major depressive disorder for years so i've thought i was losing my mind for quite some time. i have social anxiety and panic attacks. i know how weird this is but i had one in a dream last night and woke up panting and freaking out. i live alone so i have to nurture myself. i don't pray but i have been trying to learn to meditate. i keep saying i'll keep a journal but it usually only lasts 2 days or so.
you're right about the envy. i try not to do that. i used to try to keep up but after having a major psychotic break about 20 years ago i don't try anymore. i learned a lot in therapy with the best psychologist in the world. sadly he's in cali and i moved to indiana. i have some family here so some support if i really need it.
again, thanks for all your encouraging words.
 
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ajnsmom responded:
Hi Jane(?), I can totally relate to feeling older than some of the elderly people we come in contact with. I'm 48 and fortunately I haven't had fibro as long as many on this board. I was diagnosed with fibro in February 2011. had the symptoms since November 2010. I think you will learn a lot here that will help you.

Linda S.
 
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ajnsmom replied to ajnsmom's response:
Sorry I meant "Diane." My vision is bad so I need to slow down when trying to read. My vision problems are due to diabetic retinopathy and cataracts, etc. I recently resigned from my job because of my medical problems.

Linda S.
 
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missist replied to ajnsmom's response:
LOL Linda.. I was wondering who Jane was.

I quit for the same reason--just too difficult. I'd go to work and that would be ALL I could do in a day. And eventually I couldn't keep myself feeling well at work either.

I feel much better now--but am still not wanting a job--although I'm mulling it over a bit. I could use the money--but I keep hoping I can make it selling my art stuff.

My situation is I live alone with 2 dogs almost all the time. My husband is home every other weekend more or less. He makes a good amount but we have to pay mortgage in the house I"m in and rent where he is working. plus 2x utilities and all that.

We're thinking of ways to improve this situation, but that's how it is right now.

So I'm always looking for ways to cut costs--other than turning off the AC. LOL.

Best to you all!
Mary


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