Going on 25 years with FM.

By crzyinga Saturday, August 16, 2008

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I am in my 24th year trying to cope with this monstrous disease. It does get progressively worse, and the pain meds have to be adjusted accordingly. Fortunately, I have a wonderful doctor who I can really talk to and he listens. I had to quit my job after 11 years because of medical problems from the fibromyalgia and am currently on social security disability. No way could I sit at a computer for hours on end doing medical transcription with this pain. I have a husband who is also chronically ill with diabetes and heart failure, so we have our plates full. We are also taking care of our grandson who is in the 11th grade. I am very intolerant to cold, have days when I get out of bed (after tossing and turning for hours) and can barely walk. Everything hurts, some days worse than others. My elbows, knees, and shoulders hurt really bad when I get cold. It feels like I have been out in freezing weather and it takes hours to get warm again. If I go grocery shopping in the refrigerated department, I ache all over for hours afterwards. After reading some of your share posts, I now now that this is not just my problem. Family doesn't really take me seriously; I tell them how I am feeling and they don't even respond. Maybe because they can do nothing to help? I'm so happy I found this forum so that I can share our problems.

Comments (8) | Add comment

maddolphinsue

8/18/08 2:32am

Hi,Crzyinga

I understand what you are feeling and I'm here if you ever want to talk! You said that your husband is diabetic, I'am also, I've had it for 18 years, I was diagnosed three days before my 21st birthday,I'am 39 years old now and my body feels like it's been through hell!! I have alot of other health problems to, that comes from the diabetes.I also can't stand the cold it hurts me to the bone. Well enough for now, I hope to hear from you soon and hope you feel better!

Sue

gia4me

8/20/08 1:06am

Hi,

I'm Gia, and your story could be my story (except for the wonderful Dr part) I was diagnosed 25 years ago, and went out on disability 2 years ago, when I just couldn't do it any more, and had to leave my entire carrer behind that I worked so hard on for 9 years.

I was told by my ex-ruhemotoligist that fm doesn't get worse with age, and I have a low pain tolerance...If i had enough energy I would have hit him in the mouth, istead I got up and told him he was right, he just didn't give a damn.

I have been on so many meds, sometimes I feel like a toxic waste dump,(that didn't work so try this, and on and on it goes. It is true that this hell on earth, never being able to make plans because you never know if you can keep them.

Some days I open my eyes and think Good Lord, I'm still here to live another day. People just don't get it, if you told them they had cancer, that they would get, but FM and Chronic Fatigue, all people see is a person that looks fairly normal. I feel like wearing a sign, please don't touch me, or hug me, or any other contact that will make the pain worse.

I sure would like to know what your Dr is doing, maybe I can pass it on to mine. I've lost my eye sight for about 10-15 minutes, which was terrifying, I have serious dizzy spells, and along with the horrible pain, I have periods where my balance is way off, and I fall, and they still manage to sweep it under the FM rug.

If anything serious did happen, I probably wouldn't see a Dr, just to be told it's an FM problem.

Sorry for the length if this post, but I have gone through three days of so called flares, and I could not move, so I guess I vented it all on you, because you are the only person who does agree it does get worse with age. So thanks for listing, and I hope you have a few days of a little less pain.

Thanks again for listening

crzyinga

8/23/08 5:50pm

Hi Gia. I hope you are having a good day. I have been with my doctor for about 16 years. He was a resident when I met him at the hospital where I worked. He took care of my first grandchild (who is now 18) when he was an infant. We know each other on an almost family level, so I can talk to him and he talks to me and he listens. We started off with some mild pain medication which helped for a while. I have gradually moved up on the pain med scale to Lortab 10/500 3 times a day, Mobic which helps the aching joint/bone problems, and I take Xanax twice a day religiously. He will give me Oxycodone if I'm having a particularly hellish day (or week). I am able to function most days. I have the dizzy spells, the blurred eyesight, and I stumble around sometimes because I lose my balance. Anyway, it probably is related to the FM, or the condition is made worse because of the FM. I hope you find a Dr. who will "get it". They only allow 10-15 minutes to spend with a patient, so you gotta get a good doctor who will maybe spend a little more time with you. Hang in there, you got a lot of company.

gia4me

8/24/08 12:27am

Thanks,

I did just get a new primary care and she seems to actually get it, so I think there is hope on the horizon, she is willing to at least consider other options and other possible illnesses.

I read your post and it's nice to know someone else knows it does get worse with age.

Thanks for the input. If you hear of anything new please let me know

Anonymous

9/ 8/08 12:52pm

Hi Gia,

I have had FM & CF for many years!

I DO have a great Dr., it took awhile to find him and when I did I couldn't believe how lucky I was! He has helped me so much. I had to stop working 7 years ago and I am on SSD. Even though my Dr. helps me I still am not pain free. We work together on the meds to find out what works. It does take family and friends a long time to GET IT! My family is good with it but I have lost a couple of what I thought were "Best Friends" !! Well, ya know what, I didn't need them anyway! If they were true friends, they would still be "True Friends" Dr. started me on Lyrica about 9 months ago, it does work with a lot of the pain, not all of it, but what I does work on is a nice relief. I still have a lot of meds but that is the way it goes! For the Chronic Fatigue he gives me a stimulant to take in the days so I can be awake with everyone else! I hope you can try these meds, you'll be happier if they help!

gia4me

9/ 8/08 2:33pm

Hi,

I'm sure glad you have found something that works, and I do agree that if you loose the friends, to heck with them. I lost a few of my own, but I figure it's their loss. I sure can live without them.

It's also true to get anywhere you have to be your own best advocate. I could not understand why nothing they did to treat my Fibro was working this time, nothing. I had had treatments in the past, and some of them provided some relief.

So this time, I went out and found an new Dr., and I gave her all the info about what had been going on, so she decided to start all over with testing, because she felt that there may have been things going on that were preventing the treatments to work.

I am so glad I changed Dr's, because by starting over they discovered I had breast cancer. I appears that what ever symptoms I presented with were just being swept under the "Fibro" rug, that no one looked any further.

I urge everyone that if your treatments are not working for you, after several years of trying don't work, (don't wait as long as I did to get a new Dr) There may be something else wrong, and it's being over looked. You know your body better than anyone else, so if you don't like whats happening, or feel there is something else going on, Find another Dr as soon as possible just to rule out other things, I know I wish I had

Gia

crzyinga

9/11/08 9:50pm

I'm glad you found a doctor who gets it. Doctors can be put into categories - ones who don't believe you have FM, ones who do believe, but are afraid to give you the medications you need, ones who just sweep every symptom you have under the FM rug, and once in a while you get a doctor who "gets it". I wish you continued good luck with your new doctor. Keep in touch.

gia4me

9/12/08 1:36pm

Thanks,

Your right they are the classes of Dr's I have been through, that resulted in me ending up where I am now. I can't urge everyone strongly enough that you are your own best advocate.

I know sometimes it's hard to fight, when you are so tired and hurt so much, but if you believe in your heart something else is wrong, find the energy, and get a friend or family member to help you to get a new Dr.

Don't be afraid to ask allot of questions, go online and research your symptoms, and see if they even fit into the Fibro box, and if you haven't done so yet, do it now. I had to educate myself on everything anyone could know about Fibro, so then I knew what just didn't fit.

Be and educated patient, and stand your ground and fight even if it means contacting plan administrators, until you get your problems resolvved.

Going on 25 years with FM.

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