Recently diagnosed and a tad overwhelmed

I am in my 30's, married with one fur baby...a kitty. I work as a orderly at a psychiatric hospital. I am also an artist; I studied photography but I also draw, paint and write poetry.

I was diagnosed with fibromyalgia this year. I have been experiencing symptoms since I was in my early 20's, as far as I can remember. However, the symptoms became a lot worse about 4 years ago. I have been mentioning said symptoms to my family doctor for years now, but she was never worried. She only started sending me off to get tests in the last year because I was off work for a total of 7 months this time. And that does not include the time I was back at work but on light duty. The longest i'd ever been off before was 1.5 months. I mentioned fibromyalgia to her this year but she waved it off with a face and said, "Oh..it's not that". Well guess what, it is that!

I've been prescribed naproxen, dilaudid and elavil. Either they didn't work or the side effects were so bad that I had to stop taking it. My rheumatologist told me that 85% of people suffering from fibromyalgia do not feel any relief from taking medication. Apparently I am part of that 85%.

Work is coming down hard on me, I will possibly lose my job in the next couple of years unless I suffer through. My job entails heavy physical labour at times.

My family gives me minimal to no support. I'm expected to reach out to them and always be the one to contact them.

My husband is supportive but he's feeling the stress of it too. He's been my only rock but my family points their finger at him as the cause of my illness.

Still, through it all...i'm laughing and having a good time, or trying to. I refuse to wallow in this but sometimes I have days where I feel a little hopeless...but no one gets it. Not one person. Feeling alone when you're hopeless is really really horrible.

I'm hoping to meet some people who will know what I'm feeling and can offer me some support and insight. I would love to lend my support as well. Besides my job, caring for people comes naturally to me.

Thank you Smile

Hi,
It's nice to meet you : ) I can relate to the difficulty at work. I am a social worker and it can be very draining to have to help people on a daily basis when we are in so much pain ourselves. I do enjoy it very much though and I would never give up being a social worker. It adds so much joy and meaning to my life. Why does your family think that your husband is the cause of your illness? That is just not true and it sounds like they don't have clinical information about this diagnosis. My husband is also my rock and biggest supporter. I do worry about the stress it puts on both of us at times though. I have a counselor I see regularly, one reason is so I don't constantly unload on my husband and he gets a break from hearing about it. It has been very helpful. Have you considered seeing a counselor? I also have a fur baby-my kitty name Percius. Animals provide so much joy and support in our lives.

Talk soon,

Sara

Thank you for your response, Sara :) Nice to meet you as well.
Yes, I love my job as an orderly...I couldn't give it up, it adds meaning to my life. I don't know who i'd be without it.
My husband and I have had some rough years and my mother has never really fully liked him. I think that's the root of why my family thinks he is the cause. I have no idea though.
I am on the waiting list to start seeing some professionals at a rehab centre. It's a support group for people with fibro. Hopefully that will help. I just have to wait now, might be about three months :/

Anyway...thank you for telling me a bit about you as well :)

Take care

Shannon

SaraZ553 said:

Hi,
It's nice to meet you : ) I can relate to the difficulty at work. I am a social worker and it can be very draining to have to help people on a daily basis when we are in so much pain ourselves. I do enjoy it very much though and I would never give up being a social worker. It adds so much joy and meaning to my life. Why does your family think that your husband is the cause of your illness? That is just not true and it sounds like they don't have clinical information about this diagnosis. My husband is also my rock and biggest supporter. I do worry about the stress it puts on both of us at times though. I have a counselor I see regularly, one reason is so I don't constantly unload on my husband and he gets a break from hearing about it. It has been very helpful. Have you considered seeing a counselor? I also have a fur baby-my kitty name Percius. Animals provide so much joy and support in our lives.

Talk soon,

Sara

HI Poetprincess, I am glad you wrote an introduction, it is nice to know you! Have you tried any other medication for the Fibro? There are a number of medications that can help reduce the symptoms (Lyrica, Cymbalta, Savella, Gabapentin are the most common medications). I have found over the years that a total body approach works best for me. I do take a medication but I also work on keeping stress low and getting enough sleep. I do physical therapy exercises to help maintain muscle tone which help with pain. I do lots of deep breathing, visualization, and mindfulness / meditation exercises. If you haven't already, I suggest you look at the Fibro 101 section for good information. There also is a mindfulness group on the groups page you might be interested in. Lastly, if your doctor isn't listening to you, sounds like it might be time to look for a new doctor. Please keep us updated on how you are doing. Hugs!!!!

Hi Auburnm..thanks for responding. I have not tried the medications you've mentioned, nor will I be trying them. As I said, I tried elavil...which you will probably know as Amitriptyline. I had such severe side effects that I had to be taken off of it. Lyrica and Cymbalta were both originally psych medications and have lots of controversy surrounding them. I work in a psych hospital, i'm very familiar with what can happen to someone when they experience side effects.
I try to do a lot of deep breathing and visualization/meditation as well...it does help some, Exercising is almost impossible, even on my good days. The most I can do is go for a short walk or a bike ride. If I push it too much, i'll be paying for it for days. I will definitely look into some mindfulness groups...thank you for the suggestions :)
I really appreciate the time you've taken with me...it helps! :D

Hi

I always love the introductions. Does your work offer short and long term disability? I don't know what I would have done without mine. Remember you are not alone we are here and we understand.

Hello, for me sometimes I just have to decide if the possible benefits of the medication outweigh the possible side effects. I have some medication allergies as well but found that Gabapentin helps so I am personally glad I kept trying. This is an individual choice of course and only you can decide, I just want to present another perspective. Also, as I am sure you know, for a lot of people side effects subside after a few weeks. Hugs - I hope you are enjoying your weekend!

PoetPrincess said:

Hi Auburnm..thanks for responding. I have not tried the medications you've mentioned, nor will I be trying them. As I said, I tried elavil...which you will probably know as Amitriptyline. I had such severe side effects that I had to be taken off of it. Lyrica and Cymbalta were both originally psych medications and have lots of controversy surrounding them. I work in a psych hospital, i'm very familiar with what can happen to someone when they experience side effects.
I try to do a lot of deep breathing and visualization/meditation as well...it does help some, Exercising is almost impossible, even on my good days. The most I can do is go for a short walk or a bike ride. If I push it too much, i'll be paying for it for days. I will definitely look into some mindfulness groups...thank you for the suggestions :)
I really appreciate the time you've taken with me...it helps! :D

Hi PP,

Welcome. Hoping you have a great group of doctors. I think that is the key. Sorry about your job. My Rheumy put me out on disability. I am thankful and I was prob on the verge of losing mine.

Please let me know if you need anything.

Gentle hugs.

QW

Hi your story s so like mine only my family are supportive so for that I feel for you. Doctors need to learn more, listen lots more and help us. I find keeping warm and doing small tasks thru the day helps. The tiredness is the worst and again small naps help. You might need to consider work options and try obtain some kind of disability support. Hope your finding it a good day today. Jo x