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when do you give up on the medics?

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Fibromyalgia
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Posted 7/21/2009 4:47 PM (GMT 0)
hi all,

I went to a counsellor as i have been finding it increasingly hard to live with the pain i'm in and feeling  like a failure as i can't do the things i used to and feel like i was letting my husband down as i'm still not pregnant.

Anyway, i had secong session today and she said she had researched fibro and really doesn't think i have it as you'd have to have a high threshold to pain to do the sports i do. I knidly reminded her that i'm unable to do these sports anymore and while i caompletely a 7km bike race last week (just to complete it, i came last) is probably contradicting the level of pain i say i'm in.

I just have to keep going tho, sometimes i'm crying as i cycle along and i'm sure there are some scared kids somewhere that can vouch for seeing a weirdo on a bike crying and wobbling along on a bike.

It took me six years to accept the diagnosis, am i just fooling myself with trying to get help. I don't know if anyone saw my last post, the doctor said it's not like i have cancer so won't give me anything stronger than paracetomol and ibuprofen types. He'll happily dish out benzodiazepam tho,,,,,,lord knows why....i'm a recovered drug/alcohol abuser,,,,,,and therefore relunctant to take them.

We can't afford any fertility treatment and i'm slowly accepting kids may just not be in my future. It's upsetting, but, if i'm really honest, i'm more upset that the choice has been taken from me, rather than it being something that i just didn't want, iykwim.

I'm just rambling here and have already tried to locate an evening course for the winter to occupy my evenings. I'm focused on getting fit in mind and body.

Has anyone just walked away from the medics and found that doing thier own thing worked better.

Boo, determined to be happy from now on. wink

Posted 7/21/2009 5:17 PM (GMT 0)
Boo, I pretty much do my own thing now.  I'm not willing to take a lot of the meds suggested so I just plod along and have managed, probably, as well as people on a lot of meds.  I want to keep as clear a mind as possible with fibro.  I want to be able to drive without concerns that I really shoudn't be behind the wheel.  The over-the-counter things I use do take the edge off the pain and I can function.  I just pace myself, keep a positive attitude and a sense of humor, and I'm making it! 

 

I see my doctor every three months.  We mainly talk about my diabetes and osteoporosis.  When I talk about fibro he, of course, talks about Lyrica and Savella and I'm managing with this illness without those meds so I won't take them.  Now, that doesn't mean in the future I won't.  Only time will tell.  But, for now, I'm using simple pain killers, vitamins, and exercise to keep going. 

 

Sherrine

Posted 7/21/2009 7:10 PM (GMT 0)
boo, I certainly admire your determination and drive! The image of you on your bike pushing through the pain is really inspiring! You can use that determination to build a better, healthier life. It really sounds like you need to get a new, more sympathetic counselor and medic (doctor). If you want pain pills, they should be available to you. And a therapist should not be second guessing a doctor's diagnosis! That isnt her job and it isnt helpful at all!
I dont remember how long you have been trying to get pregnant. I am sorry it has been so hard for you, I know that is so heart breaking. Remember that going through this diagnosis is a very stressful time for you (both body and soul) after this adjustment period it might come easier for you. I have also heard other women on here talk about their FM symptoms easing up a bit while they were pregnant. All things are possible. Just stay as relaxed as possible.
And get new doctors if possible! Good luck, we are praying for you!
Posted 7/21/2009 8:25 PM (GMT 0)

hi guys,

thanks for the replys. Yeah, i'm getting to grips with it all, but thanks to all the great talk here.

By medics, i meant professionals, doctors etc, and after a very tearful chat with the husband we decided not to waste anymore money on fertility related doctor trips either. We've been trying to concieve nearly two years. My husband is more upset than i am but he tris to hide it.

I'm going to go it alone and stay away from them all now. I'm going to the doc in the morn to get a script for real painkillers and leaving it at that. With decent pain meds i'ii be able to exercise again, loose the bit of weight i put on and generally get healthier.

Thanks again, boo

Posted 7/21/2009 9:24 PM (GMT 0)
Boo, don't give up on being a mother.  There are other options for you...especially adoption.  It's raising a child that really makes you a mother and there just might be a very special child that can come into your life.  It's not what you had dreamed but it can still be wonderful. 

 

Just try to relax and not keep thinking about it.  That causes stress and affects your whole body.  Just keep thinking of all the good in your life and maybe the possibility of adoption.  That could bring a lot of joy in both of your lives.  It would be worth discussing.

 

I had a friend that tried for years to conceive and it just never happened.  They adopted a child and the week they child officially became theirs, she found out she was pregnant!  She ended up with three children...one adopted and two natural.  Life is amazing!

 

Sherrine

Posted 7/21/2009 9:27 PM (GMT 0)
Two years is not that long an amount of time to work with infertility specialists. The pain of not getting pregnancy when you desire it is agonizing for a couple. It is also very stressful.

My ex and I attended adoption counseling sessions when we were going through the adoption process even though we already had two children the classes were mandatory. There I learned what the other couples had experienced. All the tests, surgical procedures, invasive psychological tests, etc. The men and women who had experienced this were exhausted, frustrated and angry, to say the least.

One of the main issues that was covered was letting go and no longer working on having a birth child. At the time that was a requirement for qualifying for adoption. I am telling you this because I wanted to let you know I have some insight about what you and your hubby are experiencing.

Your decision to stop treatment is a bit abrupt but it is definitely your choice. However, may I suggest that you may just need a vacation from all of the medical procedures and meds. Sobriety does not end addictive thinking it is definitely hard work. Giving up altogether is still a part of the "stinkin thinkin" that comes with addiction.

I too push myself to exercise by swimming for 1 - 2 hours per day most days of the week, if not all. I might even participate in an open water race next year. Many people would not think I had fibro until they knew I used a wheel chair to get around most of the day. Just because we exercise hard does not mean we are misdiagnosed. Your counselor should be reported. She/he is unqualified to make that diagnosis.

I hope you and your husband find some comfort soon in your lives. Whatever you decide please realize this is not your fault. Wanting to have children is wonderful, having them is even better. Wanting to be pain free is sensible whether it can happen or not.

Take care and rest.

Donnaeil
Posted 7/21/2009 9:29 PM (GMT 0)
hi sherrine,
I'm going to take the focus off concieveing for the moment. We've just discussed it and after one more app in sept with specialist we're leaving it at that. It's in gods hands then. we will have to save hard for adoption as we're too old now for domestic adoption. It'll have to be russia or vietnam if we want to go that route.
I'm going to focus on being healthy and happy and i'm sure the rest will fall into place.
Thanks for all the suppport.
boo
Posted 7/21/2009 10:42 PM (GMT 0)
Boo,
Fibro affects people in different ways. Some people can function almost normally and others can barely move. Just because you can participate in physical activity like riding a bike does not mean you don't have fibro and it doesn't hurt. Physical activity is supposed to help control the pain and fatigue.

I have kept active and I believe it has helped me tremendously. I've increased my physical activity a lot since January and I feel even better. I sometimes struggle through my workouts but it has been getting easier. I've kept a log and can see my progress. The log helps a lot on days like today when I don't want to move.

Look for a doctor that will help you treat the symptoms that bother you the most. It doesn't matter what your diagnosis is, if you can't sleep, you need a doc that will help. You can do your own research on treatment for pain and then ask your doc. As long as you aren't asking for narcotics, you may find a doc to help you. Based on your history and your desire to get pregnant, there probably isn't much you can take.

There are things you can try like malic acid or D-Ribose. I'm not a doc but I think they are safe during pregnancy and they have helped many on this board.

Try to take one day at a time. Don't think about what you can't do, think about what you can do. It's really hard to do and it takes time and a lot of effort to change the way you think but it helps.
Posted 7/22/2009 7:58 AM (GMT 0)
hi all,
thanks you so much for all your responses, it is very reasuring.
Donnaeil-thank you for sharing your experience, yes i think we are just bogged down and frustrarted at the moment. I know what you mean about exercise and stinkin thinkin. My husband is getting especially annoyed....his latest rant is that we left it too late...I don;t think so tho. I'm sure it'll happen when the time is right. In Ireland the resources are just not as good as else where. They're not terrible...just not great.
Dagger-I'm delighted to hear you exercise as much as possible to. Lots of people say i'm just moaning on a bad day as the previuos day i might have done a lot of work. It's the arthritis that's causing me a lot of pain right now so that's my main issue. I think the fibro is secondary to it.
Thanks again for all the help abd support
Posted 7/22/2009 1:45 PM (GMT 0)
I don't know how Ireland is but over here there are so many older children in foster care that need homes and parents. I have a granddaughter that started out as a foster child when she was 18 mos old and she is going on 13 now.

 

I have chosen not to take most of the meds that is out for fibro and kinda do my own thing. I have been dealing with so many digestive issues this summer that fibro has kinda faded into the background. I do have a good GP and rheumy if I ever need help with it but I stick to the home remedies of heat and etc.

 

If we only had magic powers to use on these docs that think the pain from fibro isn't a big deal devil

 

luv and hugs

Marlee

Posted 7/22/2009 7:34 PM (GMT 0)
hi all,
thanks for the posts,
I was at doc this morning and he really tried to understand, he gave me new pain meds but i'm only to take them as and when needed which suits me. I hope they help.
He is taking it a little more seriously, but i know at the end of the day it's really what we want to take and do ourselves that matters.
Thanks for putting up with me this week.
Over and Out.
Happy Boo
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