Living with Fibromyalgia and RA as well

By BethG Tuesday, February 17, 2009

Hey Ya'll,

As the title says I live with Fibromyalgia, I also live with

RA and Gout among other things because my Fiance'

has RA and gout and is totally disabled ( in the clinical sense ), we both have good days and bad as you all know

so well, as we get older it seems there are more bad days

than good physically, what helps is the tremendous love

we share, we help each other as we are able, we do what

we can on our own and help each other with whatever

we are able to do that day.For the past four months

my fiance' has not been able to even walk across a room

first due to pain and then due to weakness in his knees

because he has had to use his power chair to get around,

but in the past week he has been able to get across the room on his own about once or twice each day but it

wears him out very quickly and his ankles swell if he

does too much so it is slow progress but it is progress

and that does him good. I am still able to work part time

but I don't know how much longer I will be able to do it,

I was diagnosed with Fibromyalgia in 1991, I was put

on a course of Ibuprophen 800 mg as needed and Flexeril

10mg three times a day and I was on that for a few months, then my doctor at the time told me to try not to take the muscle relaxers any more than I absolutely had to because of the damage it could do over time to I think she said my liver ( I can't really remember because it

was a long time ago ) . I stopped taking them both many

years ago because I no longer had medical coverage to

pay for it and went to taking over the counter Tylenol type pain killers, they take the edge off when the pain isn't too severe. None of the jobs I've had in recent years

had medical insurance that I could afford so I deal with it as best I can. As I said earlier I am still working part time

but I've already lost the major amount of work hours

simply because I have to move slower and take more breaks and it was costing them too much money so they

moved me to a different job ( actually 2 different departments ) and now I only work 3 hour shifts most

of the time because my body can't take much more than

that, when i work a 6 or 7 hour day my body screams

and it takes a couple of days to ease the pain to the

point where I'm able to deal with it. Well folks I've

reached the point where my fingers hurt and that means

it is time to call it a night. It is now 3:15 AM ( central time ) Good Night and God Bless BethGSmileThis is me

Lene Andersen, Health Guide
2/17/09 8:23pm

I've been living with both of those diseases for several years as well and both of them flaring untreated at the same time is not something I would wish on my worst enemy. You have a fantastic attitude - it's such a cornerstone in coping with the pain and the frustration.

 

I wanted to comment on two things. If you're having problems physically doing your job, it may be possible for you to get accommodation of your illness/disability under the Americans with Disabilities Act. This means that your employer is legally required to provide accommodation, by which is meant finding another way of doing the essential duties of the job. Some jobs don't lend themselves to modification, but it's possible that yours might and the good thing is that your employer has already shown a willingness to be flexible and to help you stay working. You can check out the websites of the Equal Employment Opportunity Commission and the Americans with Disabilities Act for more information, resources and contact information for staff who will be able to provide more detailed assistance.

 

I also wanted to tell you about Lyrica. This is a new medication targeted to fibromyalgia and it is incredible. The first time I tried it, I didn't need to take any other medication for the next 2 1/2 days. One tablet of quite a low dose made my body very happy for several days. There are other new treatment options for fibromyalgia and you can find more information about this and other fibro issues in the fibromyalgia section at HealthCentral's chronic pain site.

 

While I'm talking to you about treatment, I want to tell you about options for treating your RA. The drug companies offer funding programs for people of limited means and you may qualify. You can find more information about that here and may also want to talk to your rheumatologist about it (do you have to pay for the doctor yourself or do you have access to a doctor that won't charge?). That said, there are times where going on social assistance can be helpful to people like us, because that offers coverage of medication. You'll have to jump through a lot of bureaucratic hoops, but it may be worth it for you to pop by your local Social Security office and ask for information.

 

2/17/09 11:52pm

Hey Lene,

Thank you so much for the information, my fiance'

is the one with RA and he is getting medications from

his doctor, however the meds he is on can create other

problems for him so I am trying to get a business started online to make enough money to be able to pay for meds that won't harm him just to ease the pain

he goes through every day, plus something that might

cut down on the number of flare ups he has. This has

been his worst year in many years he told me a couple

of months ago. I am looking for natural remedies for

both of us. I found something a while ago that sounds

like what a lot of folks could use to get rid of the pain

for a day at a time, I'll have to look in my archives and find it again then I can let everyone know about it, the

main problem with it is that it costs around $ 60.00

for a one month supply for one of the meds I found.

Well it's been a long day for me because I got called in to work today and this has not been one of my better days as far as pain is concerned. I'm going to get some work done for my website and then I'm calling it a night. God Bless, Thanks AgainSmile

Lene Andersen, Health Guide
2/18/09 9:54am

Wow,. I read a little too quickly there!  Thanks for the clarification - at least the information I gave you can still be used, with a bit of editing on your part as to whether it's useful for you or your fiance. Smile

2/18/09 11:03am

Hi all -

I am so very glad to have found this site!  I have been getting terribly depressed for a number of reasons, but especially because I can't find a local support group (rural area), can't start one (long story, no help, everyone's got too much ontheir plate, so I wing it one conversation at a time...), and all relatives far away (that's partly good and partly not!).  I do have my dear husband, but have overloaded on him when I get down.  I have both RA and FM - the FM is lesser, but the punch line is - when the RA is well under control, that's when the FM kicks in.  I don't have it as bad as some, but right now depression seems to be worsening for a couple of reasons. My wonderful daughter is really on her own (the light of our lives) a couple of hours away.  I no longer have the energy to 'take a little retreat' that used to boost me so much, a couple of hours away. The travel takes away whatever would otherwise boost me.  I have to up the caffeine just to be able to drive that far.  I have low tolerance for most meds, and name a side effect, and I've had it.  I can't take a decent walk, can't ride bike outside (just got a new one 2 years ago in hopes, but wrist and ankle couldnt really handle much then, and none now).  Parents & inlaws are gone. (at least I don'e have the burden of caring for elderly parents - I compensate somewhat by visiting an elderly homebound friend who is a leg amputee herself.  It helps both of us.  I sew, I can still play a little (very little) piano & guitar, but can over do that too (wrist).  All of the things/people I have used for support seem to be going out of my life, and I'm just not sure where to go from here.  I do drink 1 cup of green tea with honey in the morning, which helps me focus a bit.  I now have to take a lot of benefiber, recently added activia (Dannon puts too darn much sugar in their products, but the Activia has diminshed the terrible gas I've been having for several months - started just before my colonoscopy in November. I have gastro issues:  8 polyps removed, gastritis, esophageal dilations.  Well, I think that's enough.  If you've read this far.... thank you!

Ellen - just registered.  Please excuse my rant.

57 years old, married to Gary with one daughter Michelle (24) engaged to Sean (23), both of whom are looking for work!  Still working, plodding on... fortunately, I do have good insurance.  Just a bad body!   (bad, bad, body, --- grandmother, aunt and cousin also have RA.  Two sisters with polymyalgia rheumatica, another is recovering alcoholic with osteoarthritis. We're spread all over the country!

2/18/09 12:37pm

Hey Ellen,

Welcome to our new extended family, I'm new too,  so

far I am liking what I've found here. You and I have

something in common besides Fibro and RA being a

royal pain for us, my fiance's name is Gary too and

he is the one that suffers from RA, I suffer from it

only to the extent that it hurts me to not be able to

help him with his pain, Fibro is no fun that is for

sure but not as bad as what he goes through, at

least to me he seems to have more severe pain

than what I deal with, of course he has been dealing

with RA since he was very young, just didn't disable

him until the '80's when it put him in a wheel chair for two solid years, he somehow pulled himself out of that

but as he has gotten older and the past year has been

the worst since he was in the wheel chair. Ok I'll

have to come back later, it's time to get us some lunch.

God Bless and stay as positive as you are able, BethG

2/18/09 12:54pm

Hi Beth,

Thanks for your note!  I know FM can be very bad.  Hard to compare, everyone has something to deal with!  How did Gary work his way outof the wheelchair, that's exciting!  I'm sure grit and a lot of hard work were part of it.  We have to be our own coaches, only somtimes we need to hear it from someone else and know that they care, even if they can't help!   When I unload on my Gary (sometimes i just can't talk about much else, because I'm trying to decide which med I need most, cant do all at once), sometimes I finally get a grip because I can see how much I'm dragging him down and that's the last thing I want to do!  I try to remember that he can't possibly know exactly what to say or how to respond, and that it's my responsibility to support him in the ways that I can.  Like, even, just appreciating everything he does (not just what he says) because that's A LOT!

I'm in the middle of lunch too...been playing a lot of hookey at the office this morning, but it's been kind of slow and I REALLY needed to communicate with y'all!

Ellen

2/18/09 1:10pm
Hey Ellen, What kind of work do you do? I work part time at a nursing home, plus I'm trying to get a website working on the internet, I sell gift and home decor items and some novelty items like Nascar,Harley Davidson, mugs and coaster sets, and a lot more. I'm no techy so this isn't easy especially when I have to put in the pictures and type in a description for each item, I've got a catalog with over 3200 items. Well that's it for now. God Bless, Beth
2/18/09 2:52pm

Hi - just typed a long reply, hit some button, and it disappeared... don't know if you got anything or not!   Darn...

Will have to get back to you later.  Thanks so much!

Short reply: I work as a secretary at St. Lawrence University, for the chemistry & Physics departments.  Great people, but sometimes gets boring & routine.  However, on my bad days, boring and routine is probably a lot safer than teaching music which is what I trained for, but didn't have the energy to carry out (long before I knew I had RA!)

Best wishes, will write more later -

Ellen

4/ 2/09 3:15am

Hey Ellen,

Sorry I didn't get back to you before this, I've been trying to get my website running the way I wanted it to, and it is about to drive me nuts, but I finally got my Add To Cart buttons right so people can actually buy the things they want. I just posted a comment to Donna and told her a little about it too, I guess all ya'll can read all the comments on my page, at least I hope so, anyway like I told her, at this point I really don't have a job anymore because they gave the hours I was working to the full time

people, I've been there over two years and I think I missed only one or two days at

most, plus whenever they called me ( even though I might feel like crap ) I went to

work and did my job the best I could ( of course I took more time than anyone else to do it ) my fiance' keeps telling me I should try to get a job at the local market so at

least I'll have some kind of paycheck coming in, because his check won't cover all the bills, he doesn't realize how bad I feel most days because he is in so much pain all

the time that i try not to show it too much, he knows I'm in pain and that I'm tired

all the time but he thinks I'm tired because I'm usually up at night until at least

2 or 3 AM on my computer, he doesn't know that I'm only up so late because it

takes me so long to do things, I usually take a two hour nap either in the afternoon or early evening when I can just to give me a little energy and so I can think a little more clearly, plus to give my eyes a rest. I'm trying to get my business working so I can

make the money we need, and at 50 years old it really isn't easy learning all the

new stuff I need to get a list of customers and get people to go to my website and buy. I'm not great with technical stuff to start with but I can't afford to hire someone to do it for me so I have to learn to do it myself, and that is one thing that takes a

lot of time, because there is so much reading to do and videos to watch. The worst

part for me is that he doesn't believe that I'll ever make it work enough to earn a living. It gets really depressing and some days I feel like just giving up on it, and then

I get to thinking that I cannot give up, I will not quit, for once in my life I am going

to finish what I have started, I will somehow, someway make this business work and

not just for earning enough to just get by, I will figure out how to get a lot of people

coming to my site and buying the items they want to give as gifts and the items they

want to add beauty to their homes or to give to those they care about to make them

smile every time they look at what they got from my website or my catalog. Sorry I

do tend to run on about my business, but I really can't seem to help it, I've got over 3200 items in my catalog and they are all really neat things. Once I start making

enough profit to have some left over after the bills are paid then I am going to start

putting money aside for a new house that I can put my favorite items from the catalog in. The house we live in is too small to fit some of the things I want, one day I want to build a new home for us that is handicap accessible so we can both do the things we want to do without having to ask someone else for help. Okay I'm going to stop

writing now. It is 2:12 AM here and time to get some rest, Ive got laudry to do in the

morning. I hope I haven't bored you silly, thanks for reading this. Have a Great Day Beth

4/ 2/09 8:39am

Hi Beth,

I'm kind of overwhelmed right now, cannot respond too long (darn, just hit that delete button accidentally again!

Did you think of doing web work from home for others, as well as for yourself?  If you can do web design, that is an option, and you wouldn't have to be on your feet...

I believe there's also something called VESID (connected with social services) that provides educational funding for people with disabilities... maybe could retrain for some appropriate occupation.  Working at a local market or anything being on your feet does not sound great to me!  (I simply couldn't do it myself...)

I wish you well.  I'm enjoying Tai Chi myself very much, helps keep me calm and focused, will start on Qigong next.  I gave up eBay for Lent and felt good about that - we really don't need to buy much, but when I get bored, I  browse .... and have gotten some wonderful bargains, like Sag Harbor 100% wool pants.  That's the kind of practical stuff I like (you understand I live in the Frozen North!)

Well, I hope things get better for you - and that your family understands and continues to support what you are doing.

Best wishes,...

Anonymous
Donna
3/30/09 10:29am

Hi!

 

Don't give up, I was strickened with RA, Fibro, RLS, IBS, Sleep Apthnea. I have found a foundation for Enbrel which is what I have been on since 1/2002. It's called Healthwell Foundation, 1-800-675-8416 or they have a website. I also use Duregesic pain patches (fentyl generic) and there is Jansseen Ortho Patient Assistance Foundation Patient Assistance Program 1-800-652-6227. I am not able to work at all. Check these out, they have been a life saver for me!!!!!

4/ 2/09 2:15am

Hey Donna,

Thanks for the information, unfortunately I don't have any health coverage, nor do I

have any money for meds. The worst part for me is that I haven't been able to go to a doctor for many years for those two reasons, I am afraid that it is going to be a while before I can find a way, I'm getting ready to apply for Social Security or SSI or whatever I can get because at this point I can no longer do my job in the time allowed so the nursing home I was working at has given the few hours I was working to their

full time people and put me on what they call PRN status ( which means if someone

calls out and they can't get someone else to fill in then they call me ) this basically

means I no longer have a job, I haven't worked since March 10th. Since my fiance' is on a fixed income due to his RA and Gout that means that there is even less money to work with and if my website doesn't start making any money really soon I'm going to lose the high speed internet that I need for business, plus other bills won't get paid

so there is nothing I can do about my fibro right now, and aside from that we don't have a doctor here in town and my car barely gets me to and from where I was working, and my fiance's isn't in much better shape with barely enough money for gas to get him to the doctor once a month. I will look into the places you wrote about

though and see if they can help somehow.

Thanks again for writing to me. Beth

4/ 2/09 10:55am

Beth, I just called Janseen about the cost for pain patches and you can go to the pharmacy each month with a script from your doctor and get each month supply for FREE!! I was shocked to find out that they are FREE!! I am blessed with a doctor that I see every 4 months and I am able to get scripts as I need them. Maybe you could find a doctor similar. It would be worth your weight in gold!! I will continue to pray for you.......Smile

4/ 3/09 12:37am

Hey Donna,

Thank you so much for the information, As of today I am starting the process of getting some help so I can go to the doctor, I'm still not sure how I'll get there

but I'll take one step at a time and eventually things will come together. At this

point I don't have a choice, I need to find a way to at least lessen the pain so I

can focus on the things I need to do to make a decent living. I hope you are having

a good day. God Bless Beth

4/18/11 10:02pm
Beth I've delt with fybro too I have researched it everywhere I have learned a lot of it has to do with food the more acidic the worse my pain is If I used artificial sweetner the worse the pain is. The more water I drink the better I feel. I'm off lyrica and pain meds I had to give up a lot of foods and drinks but well worth it to not be in pain I still have flare ups and some pains every now and then but at least I'm better than where I was almost crippled and not even able to type now I can I'm texting this on my blacberry just give it a try its hard but u can do it. Fybro in ky

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By BethG— Last Modified: 01/23/12, First Published: 02/17/09