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Let's Be Supportive of Each Other
6 Replies
Carrie - July 24

I'm just new here, but I've seen the conflict about treatment/cure with people afflicted with FM on this forum. I'd like to suggest that we all have to find our own way. I think people appreciate that there are many suggestions and options to look at here, when looking for ways to deal with their illness, but there's enough conflict from the "outsiders".... the people who have no understanding whatsoever of what we're dealing with every day.

I was subjected to prejudice from a plastic surgeon I saw yesterday. Along with FM I have many, many other illness going on, as well as tumours, growths, etc. This surgeon had never seen me before and when I handed him my typed illnesses/medications sheet, he snorted when he said "oh, fibromyalgia". Needless to say, I left. He was young and arrogant and had no compassion.

My sister had FM as well. She also had many chronic illnesses. She passed away last year from diabetes, and her FM pain wasn't similar to mine. It astounds me that we had the same problem, but didn't have the same symptoms. So each of us is different. When we are ready, when we need to hear something or say something, let's keep an open mind. God Bless you all. Carrie

 

Debra - July 22

Dear Carrie: Your words are spoken from the heart with great compassion.You seem to be a very strong,wise and honest person.What you have gone through and are still going through must be extremely hard.I'm very sorry that you lost your sister that must have been very painful to endure.And i'm sorry that you are so ill.There are alot of doctors that have no compassion or understanding or even care to know how your feeling or what your going through.Alot of the Doctors today only care about how much money they are going to make from your illness.Far and few are a handfull that really care.I also agree with you that there is alot of conflict and dishonest angry people out here.But there are many,many wonderful honest people out here as well.I've been on this fourm for about a year now and i know who to watch out for and who to give my time to.I entered a post a while back titled No Cure For Fibromyalgia But dont give up hope and had some very nice people respond to it up until a few days ago.A person named Tanner had left me a very rude message for no reason.If you were to read my post it does not say anything to harm anyone.I do not try to sell anything books,creams,juice and so on.I only speak the truth and have a open ear to the people out here that are suffering endlessly.I am one of those people.I hope that this forum can be of so help to you and that you will know not to be fooled by the wrong people.I pray that you will continue being strong and that you will find a understanding good Doctor to help you.Please take very good care of yourself and never give up hope.Yours truly Debra...

 

Carrie - July 23

Yes, I did read the post you made and it was a very uplighting message - I was encouraged by it. I've probably had FM for 4 years, that's what various therapists told me... kinesiologist, physiotherapist, counsellor. But my family doctor at the time just flat out told me that she didn't "believe" in the diagnosis of FM. I stuck with her thru many of her illnesses, and inadequate care, until she finally had to quit her practice. The last few months have been very difficult for me.... stress re finding a new MD, more loss in the family, and I've had a huge flare-up of symptoms. (I now know from reading postings that this is a flare-up!) I've found a wonderful new doctor who first of all wanted to help me deal with the horrific pain and my depression. It took 5 visits with her before we finally got to a complete physical check-up. After examining me she said yes, you have FM. Funny how I felt when she said that. After all these years of trying to shut that out of my mind, here was someone who acknowledged it. My husband is very supportive, and he says "yeh!" that I got a diagnosis. He's right, I know, but I'm still having a hard time just accepting it after 4 years of repressing it. Thanks for your kind words re the loss of my sister. It's been very painful losing her. She was my very best friend. God Bless, Carrie

 

Judy - July 23

Hi Carrie, I know how you feel about the way the Doctors treat us. I am having a hard time finding a Doctor take me on. about two weeks ago I started having Chest pain thougth maybe it was heart burn I have had fibro for 4 years well prob more then that but that is when I Doc finally told me what it was. Any way I got some poor response when I tried to share the health juice i was on that helped me on this site and didnt say to much after that but kept reading. Needless to say I ran out of the stuff and that is when I got the chest pain my PC tired to send me to the heart Doctor and she flat out told me that she wouldnt take me on because I was to sick and was a high Risk to her wow I was shocked ended up in the Hospital for two days just to find out it was the Fibro.. So hang in there hopefully we will find someone out here who will figure out what this Fibro really is and I notice that we all have many things wrong with us. I think its all related somehow. Good luck nice talking to you

 

Carrie - July 24

Hi Judy. Yes, the more I read on here, the more I think that many of us have suffered a lot before getting to the diagnosis. Unfortunately with the diagnosis the situation doesn't change a lot. I guess I'm relieved to have the diagnosis, since I'm being paid by an LTD plan (insurance company). There was hope that I would eventually be able to return to work in some capacity, but now with this FM, I most likely will just have to forget about that. I read some of the postings that you made, and others made re the juice you were taking. My take on it is that if it helps you, then use it. Everyone of us has to make up our own minds about how to live with this illness. I've heard some people being frustrated with taking meds because they make them groggy, and others who haven't had a diagnosis yet, but the bottom line is just finding out how to manage day-to-day. I read something today, can't remember where, but it was "Grow Where You're Planted". In other words, get on with life, we can't afford to wait until "things get better", or "some day I'll be better". So far I believe there is no "magic bullet", the cure-all, fix-all. There are many syndromes and ailments we're dealing with, and possibly as each aspect is taken care of, we'll notice some improvement. I'm just relieved to have a much better doctor now. Take care of yourself and I hope you have a much better day tomorrow! Carrie

 

Judy - July 24

Thank you Carrie, I noticed you were up late. We cant sleep lol..I think that when something goes wrong with the body it starts attacking everything else and when people look at us they dont believe we are in such bad health because we dont look like it. I refuse to give up or give into it. I try to stay as active as I can for a while I didnt get out of bed or didnt get dressed and let this thing consume me now I try to stay as busy as I can and I think this stuff I drink helps me as much as anything else I tried . None of the drugs really helped me just caused all kinds of side effects. Dry mouth from meds then you get dental probs stomac prob all kinds of things, I had one guy tell me his Aunt died with Fibro I was Shocked then he said it was the meds that acutally Killed her..That is why I dont want to take everything the doc gives me. it is nice to come here and talk about things that we go threw and share in our family and friends unless they share the same prob dont really understand. you will find Neg people everywhere but for the most we all share in this illness on here, I am happy we have somewhere to go to talk. Hope you have a great day.

 

Carrie - July 24

Hello Judy. Yes, this forum is great! I like the web site as well, I've been referring back to it for different things. I want to start on a better diet, so will get that info from here today. In the past 12 months I've put on another 25 pounds! Gads. I should have lost that 25, not put another 25 on!!! I'm heading out to the YMCA in another hour or so. I go swimming (sort of) twice a week, and I want to get back to cycling for 10 mins at a time. If I could get a routine going, I'd like to go 4 or 5 times a week. Do you have sort of exercise program... however loose it may be? It's hard to stick to anything routinely isn't it? That's the hardest part for me. Remembering and having the mental energy to take the meds, supplements, pay bills, etc. I've learned to be a bit nicer to myself lately. I make a lot of mistakes, get things wrong, can't remember, but now I tend to laugh about it. It's a challenge for me to keep life simple, but that's the best place to be. My social life sucks because I don't want to make commitments then have to cancel. I've disappointed a lot of people over the years, and that weighs heavily on me. Thank heavens my husband and I love each other's company! And he's very supportive. I know I'm fortunate that way. If he was the person who was so ill I can only hope that I would be as loyal and stick with him. Have yourself a great day, Judy. Don't give in....... Carrie

 

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