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Old 04-11-2005, 11:59 AM   #1
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How many of you have lost friends because of this disease?

Just wondering today........I don't think I am alone here. I have dealt with chronic pain for many years and felt I was dealing well with it. Worked for years, didn't have to take many meds, just an occasional Vicodin.

Then when my spinal deterioration got worse, especially the neck, and then the cervical fusion, which eventually caused the fibro/CFS/myofascial pain-well, things really went downhill from there.

Now, I am on 9 meds a day, plus the Vicodin for breakthrough pain. And I know that my personality has changed, but so has my thought processes, and my priorities. And the way people perceive me has changed tremendously.

I have lost 2 of my closest 'friends' in the past few months-basically of my own choosing. One is a closet alcoholic who refused help, and called ME a drug addict! The other, I guess you could say is addicted to depression. Just wants to be in a hole all the time-no matter what you say or do, she can't be happy. I had to let go-it was becoming way too toxic!

Anyway, the point, if there IS one, of this post, is to just ask: have you all realized the changes in your own lives, in your relationships, and have you finally reached points where it's OK to be who you are now?? Will I ever just reach that point? This metamorphisis is quite painful at times. Thanks for letting me rant. PG

 
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Old 04-11-2005, 12:18 PM   #2
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Re: How many of you have lost friends because of this disease?

In simple terms: I am who I am, I'm going to do what I'm going to do, I'm not going to do what I don't want to do -- love me or hate me because this is who and what I am.

And of course there has been changes in my life with other people. I have less friends now because THEY don't want to deal with MY pain. I don't even complain that much either. Goodness. But I have defintely found which friends are true friends and stick by me no matter what. And I have found that a true friend is not someone who will bring you down about this all, but raise you up, but always be willing to cry with you when you need it, or listen to a few problems, or make you laugh when you do something like putting your socks in the trash can instead of the laundry basket (those were new socks too!) so you don't feel TOO bad. True friends listen and care and are always there, and they love you for who you are.

Anyway, I don't even know if all that answered your question, but...there you are anyway.
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Mitral Valve Prolapse
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High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
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Old 04-11-2005, 01:00 PM   #3
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Re: How many of you have lost friends because of this disease?

Thanks. It wasn't really a question so much as a reflection. And wanting to know how the rest of you have dealt with the changes these diseases have put on our relationships....

When you said that about our friends not making us feel bad about putting the socks in the garbage instead of the laundry, that made me feel sad. One of my ex-friends just didn't and wouldn't 'get it' that my brain doesn't work the same anymore. She and her husband work in a foreign country, so we don't see eachother but about twice a year.

So, when she came out this time, there were considerable changes, and she basically made me feel terrible that my brain wasn't functioning as well, that I wasn't as sharp as I had always been before. She laughed AT me a lot, and that really hurt! How can someone who claims to love us do that to us??

Well, no sense crying over spilled milk, as they say........just clean it up, buy another carton and move on. Or learn to live without it!! Thanks for letting me rant. I'm just hurting emotionally today and need some therapeutic ranting, I suppose. PG

 
Old 04-11-2005, 01:39 PM   #4
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Re: How many of you have lost friends because of this disease?

I am now older (56) with Fibro, but I have had it since I was 32.

I feel better about having it now than ever before (if you ever feel better about it . NOW, I can blame everything on a SENIOR MOMENT.

I'm in a club with over 275 women and stay very busy with luncheons, etc. If I need to cancel, no one misses me most of the time.

I don't call it Fibro Fog anymore and everyone seems to relate with the SENIOR MOMENTS since most of us are over 50 and I can tell them I have FIBRO and they say, yeah....I know someone with that...it's an awful disease....and I say yeah...it is...and move on.

I find the LESS I talk about this illness the better. I have tried every kind of friendship in the world with it. No family support....they think I'm nuts...and the works. It all hurt.....I became a recluse for years, but the depression of that almost killed me too. Now I take my meds and if I'm not crawling on the floor I GO, I LAUGH, I have a good time, and leave the illness at home as much as possible.

I'm not real close to any of these ladies, but as I said, most of them are older and if they don't have Fibro, they have a ton of other stuff so they understand illness, pain, and debilitation as most have arthritis.

I don't know your age, but I also do not know of anyone who has not had to count as loss Family, friends and even church folks. We live in a world without compassion (the ability to stand in one's shoes).

It gets harder as you get older and now I have a LOT of other stuff to deal with. DDD (degenerative disc...............I thought I knew the worst of all pains until I got that and Facet Joint Syndrome and Arthritis of the Spine)....there really is worse pain. Who'd thunk it ! I am much weaker, and much less agile, though most people look at me and think I'm about 45 or 46 rather than 56, so I guess all that REST does pay off somehow.

I hope you all are having a pain free day.....we have storms coming....so I'm going down fast.

Hope this input helps someone in some small way.

Blessings to all........

 
Old 04-11-2005, 02:37 PM   #5
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Re: How many of you have lost friends because of this disease?

Hi, Hope you dont mind my input here, I'm still in the stage of the dr decieding if I have this or lupus, doesn't really matter what you call it just the fact that I feel this way..
I also have numerous spine issues. We had made a big move just before all this started happening to me and I had yet to make friend or at least any that would hold up through these changes.
It's so hard on me that I have 8 grandchildren now and hardly know them as the diesiese has hendered that, myself I'm 51 but have spent the past 6 yrs in the fog and find it hard rather I have friends or not.
I guess I shouldn't grieve for what I didn't have but it would be nice to have someone close to share the horrors of going through all this and the fear of all the things I forget..
Linda

 
Old 04-11-2005, 03:58 PM   #6
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Re: How many of you have lost friends because of this disease?

It's really sad that life has to be this way. It's very common when you suffer a autoimmune problem to end up through no fault of your own, being more of a recluse. People don't, just don't understand the brain fog thing. I really think, people think, that your using that as an excuse. Part of this is due to what I can only term as medical brain washing. I have CFS/fibro, and this use to be called "the yuppie disease". Overworked yuppies having a pych moment. I even saw on Web M.D. that people had CFS because they didn't exercise enough. I found this sooooo appaling!! So the general public gets disinformation and don't understand what is really going on with you. Well hey, what are you going to do.

 
Old 04-11-2005, 04:13 PM   #7
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I am 52, will be 53 in a few weeks.......

I also have a degenerating spine. So, I have lived with chronic pain, to some degree for quite a few years. But I was able to work after 2 back surgeries, and I guess people just thought I would 'bounce back' after this one, too.

They put me in this box, so to speak, of someone who had health issues, but didn't let them get her down. Now, I'm just not that person anymore. The pain of fibro is at least 10x's worse than my back pain on a bad day! And the fatigue, well, we all know, it just steals your life and your livelihood!

Thanks for the input. We are all in this together-we WILL get through it. That's what support groups are for!! PG

 
Old 04-11-2005, 04:15 PM   #8
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Re: How many of you have lost friends because of this disease?

greetings,
i ended several friendships and stepped gently away. two of the friends got their lives together enough to respect my boundaries and came back into my life. what joy. one is dead now. we spent the last ten months of her life together.
most of my friends now are since i was diagnosed more than 10 years ago. my high school girlfriends are the best. the way my partner chose to treat me led to my ending the relationship of many years. my closest girlfriend at that time passed her judgement on me and let me know how she felt. i was taking an easy out, her words. the partner too. anyway, i chose to forgive both of them as i knew they simply had no understanding and my friend a few years later was also diagnosed with fms. she has a milder form and still enjoys and active work and social life. horray for her! i hope she never walks the path i have.
sometimes we come into someones life to serve a purpose and when we are done serving that purpose it is time to move on. often when people leave our lives there is much to be learned simply thru the process of setting them free. knowing the mutual purpose has been met.
fortunatly the world has gobs of people to meet.
peace,
bluelakelady

 
Old 04-11-2005, 04:51 PM   #9
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Re: How many of you have lost friends because of this disease?

Hi, everyone,
Thanks for this topic. I just had to resign from yet another volunteer organization I wanted to help out with because this week I am too fatigued to go to the meetings.
I'd hoped to make some friends there. Other friendships, family...yes, so often just becuase of fatigue.
I go through periods when I am more okay, then crash and find I can be up and active for maybe six, seven hours, then need to sleep for a few hours again. Is this "normal" for FMS? It's such a change for me, and I, too, am having an awful time adjusting my head into a place where it's okay for me to be this way.
I have a lot of other physical damages to my body from almost a lifetime of severe eating disorder and immune system deficiencies, and the FMS feels, at times, like a cruel joke, the straw that breaks that camel's back.
The fatigue just depresses and discourages me. Can anyone offer some help?
Thanks so much, peace

 
Old 04-11-2005, 05:54 PM   #10
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Re: How many of you have lost friends because of this disease?

That's why this message board is so wonderful. Even though I don't know you all very well, and surely won't know you off of here, you guys are some of the most understanding, loving "friends" I have. I just wish I could give you all real, in-person, bear hugs. Gently of course!
__________________
Diagnosed with:

Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
Old 04-11-2005, 06:17 PM   #11
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Sea Turtle.......

I am not sure if it is FMS or CFS that causes me to be so exhausted-I KNOW that I have the FMS, and assume that I have chronic fatigue, simply because I am so tired most of the time!

I have to have at least 9-10 hours of sleep a night and a good hour or two nap a day or I'll be physically ill. And I think most of us here can relate to what you are saying.

When I have a bad fibro flare, sleep is next to impossible due to the pain. None of my pain meds will even touch that pain! Hope that helps you understand this a bit more. PG

 
Old 04-11-2005, 08:30 PM   #12
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Re: How many of you have lost friends because of this disease?

Hey Ya'll!

I think most of you here know about all of my "ailments" . And I just had to answer this thread.

When I first started gettting lower back pain and then the FM, I was still working and I got a lot of support and sympathy because of my back pain, but trying to get people to understand the pain and symptoms of the FM was more difficult. I was very lucky to have worked with the most wonderful caring people, managers included, for nearly 9 years. I was a waitress at a Cracker Barrel. I loved my job. I loved waiting on people, bringing them their food and taking care of them while they were in my station. I had a lot of "regulars" some I still see and hear from (even tho it may be through a third party) today, over 2 years since I left my job.

I continued to go into the "Barrel" a lot whenever I could after I quit. I live in southern Alabama on the gulf coast, and the restaraunt was in Florida, just across the state line, so I'd go in there after a doc's appt or whenever I found myself in town. I still wandered around the kitchen and dishroom, visiting the cooks and the other staff. I missed my job and my friends a lot. I would sometimes even get to see some of my "regulars" and get to visit with them.

However, I think the past year or so, I have lost touch with most of those folks. I haven't gone into the "Barrel" in months. Mostly because I have been feeling worse these past few months. I recently was dx'd with CFS, which has made me more tired, and my back is so much worse, I have to sit sideways in my car to drive. I have some nerve damage in my back that may be permanent, and I can't raise my right leg, I've got that mummy kinda shuffle going on when I walk now, unless I use my cane. So I'm like a lot of you, housebound. I would LOVE to volunteer. I want to join a pro-literacy program to teach people to read, or volunteer at the NICU to help rock babies, but I can't commit to anything cuz, one, I can't drive very far, and also I never know how I'm going to feel when I get up. I know many of you can relate to this for sure. This is why most of us can't work. We can't commit to a routine. Not too long ago, before I got sick, this is NOT where I saw myself at this point in my life. I really thought I'd be working a couple of shifts, volunteering more, and if possible, my ultimate dream was to join the Peace Corps. My how things change.

I used to get phone calls, emails and visits, but they have dwindled. I don't live near where I grew up and still have some old friends there in Iowa who I DO see whenever I make it back there, which is absolutely wonderful. I cherish those "highschool" friends, to me, they are the best.

But I miss my friends terribley. I have one good friend who does come to see me and call me whenever she can. She's the best. Actually, just last week she came by and brought an older woman who she had taken to a craft store that day. Well this woman, probably near 60 came in the restaraunt a lot and I waited on her often. It was so good to see her. She has RA and FM. But the friend who frequently calls and visits is a blessing. I love her dearly. Every Easter I get a little basket, every holiday she brings me something. And during Christmas, I have her and another friend come out and we exchange gifts. The other woman is a very good friend, but I haven't heard from her in so long. I write myself notes to call her, and I keep forgetting. I know her, I think she's waiting for me to call. Which is the other issue. I think I should probably not wait for them to call me, I should call them more often.

We did go out for dinner on my birthday right before Christmas and the one friend said to me, "It's amazing to me how good you look for all that's wrong with you". See it's right there, you look good, so it's hard for people to understand there's a war going on inside of you. I usually look pretty bad actually, but I do dress up nice when I want to, and that's what everyone sees when I go visit the restaraunt or I go somewhere with friends. Of course they see the pain from my back when I try to sit, stand or walk, but they don't see the FM, the CFS, the Carpal Tunnel Syndrome, the Myofacsial Pain, feel all the trigger points that are inflamed on my upper back, the Cervical Spinal stenosis, or the spinal stenosis in my lower back, or the bursitis in my right hip, or they don't feel how sore my teeth are from all the cracks in them from clenching my jaw so tightly, nor do they see the tension headache, nor do they see the three lower lumbar discs that are herniated and torn, nor do they notice that I can't lift my leg, or drive without sitting practically on my left side with my leg laying a certain way so I can use the gas or the brake (kind tricky). It's all the stuff they can't see that is my illness. They can "see" the physical limitations I have, but not the pain.

So yes, I guess your life changes in so many ways. Many many ways, and we are left to try and work around that as best we can. But look at all the friends we have on this board. Friends can reach across so many spectrums of life, and yes, we do have many friends who only come into our lives for a short time and they are there for a specific reason. Think back, you will remember some who came into your life only for awhile and if you think real hard, you can remember why they came into your life at that particular time.

Oh and I had to comment on the exercising and CFS. I ran 10K and half marathons, lifted weights, walked, biked nearly 20 miles a day, did ALL that from my 20's into my 30's, and look at me now!

I can say this. My physical friends may have dwindled, some of that may be my fault in part. I need to email and telephone more, but I have many many friends here on the board, and you know what? That means just as much, more in some cases, to me than any of my local friends who are right here with me in person.

Thanks for the great thread! Great topic!


"We must be the change we wish to see in the world" Mahatma Ghandi

love,
tk

Last edited by tkgoodspirit; 04-12-2005 at 02:41 PM.

 
Old 04-11-2005, 08:59 PM   #13
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Re: How many of you have lost friends because of this disease?

Being active with friends and trying not to be the party pooper has been hard. I managed to not lose any friends, but I was lucky that they understood that my pain was real.

I never complained-well maybe from time to time. But I've always done what I could as far as socializing ... some people are understanding and I am lucky I have friends who know that the real Rachelle is a super fun gal, and she can't always come out But when she does, it's a good time

 
Old 04-12-2005, 05:40 AM   #14
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Re: How many of you have lost friends because of this disease?

Hey TK my story is so lke yours, I waited tables at bob evens for yrs before and had the friends and regulars ect. my thing is I fell at work and that was the begininng of the end it started with all the spine and leg pain and escalted then I fought a losing battle with WC and ended up losing my claim because I didn't have 6 grand to go to trial and most I think believed me at work but then on the ohter hand like my attorney told me people don't want to believe you can screwed by the system because if it happens to you then it may happen to them and no way do they want to think that can happen so it's easier to think I was faking and looking for a settlement.
This began 6 yrs ago and now it's either fibro or lupus or both I don't know, I just know life has changed I used to volunter at the domestic violence shelater and would love to go back but they need peole they can depend on and I'm not dependable strange I was always a hard working and dependable employee and friend, mother and spouse...
Rachelle, pray that like continues to be as good to you and that you don't lose anymore and even gain, you sound like a good fun loving person.
Linda

 
Old 04-12-2005, 06:40 AM   #15
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Post Re: How many of you have lost friends because of this disease?

You are soooooooo right, it would be nice to have that comfort and network of support through this illness. I think that it's hard for us to understand it, much less anyone who doesn't it.

I have a CHAMPION of a hubby, who is my best friend and he has walked me through this like a guardian angel. It is he I tell my troubles too along with my Friend, the Lord.

I have a strong constitution NOT TO LET THIS ILLNESS completely destroy my life, therefore my cup is half full. It has taken most of my dreams, but I refuse to become a WOE IS ME PITY POT, in which case I would lose anyone that comes near me.

It's hard to get up and SMILE and Say THIS IS THE DAY THE LORD HATH MADE ..I "WILL" rejoice and be GLAD IN IT....but I do and therefore My strength to face it with hope and joy comes forth.

I understand not having the energy for even grandchildren, but I find that Oregano Oil really has helped me with energy and helps the pain too. I will go to my luncheon today because of it.

I think Lupus and Fibro are very akin.....and you are right....it doesn't matter except for treatment....they are both bad.

I pray your days will be better.

Blessings to all......

 
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