Fibromyalgia

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Specializes in Gerontology, nursing education.

Wow. I just came back from the clinic and, with my history and symptoms, I very likely have fibromyalgia.

I'm a little stunned, yet relieved. I've been living with pain in my lower back, shoulders and neck for years, plus numbness and tingling in my extremities. Sometimes my muscles ache so much I want to cry. I've had insomnia forever and can't remember the last time I had a good, restful sleep. It's hard for me to fall asleep and hard to wake up. Thought it was depression or an anxiety disorder, maybe some weird sort of sleeping disorder, exacerbated by shift work. My coordination has been noticeably decreased and I feel like I'm as clumsy as an adolescent . Have been worried that this might be MS. Have been very forgetful, especially the last six months or so, but chalked that up to perimenopause and stress.

When my practitioner checked my tender points, I nearly jumped out of my skin. Actually cried a couple of times and I am not one to cry easily.

Apparently my mother has had similar symptoms during her adult life but has never had fibromyalgia either diagnosed or ruled out.

Now that I have an answer, where do I go from here? How is this going to affect my ability to work? Fatigue has been a problem when I've been working, but it's also a problem when I'm not working. What do I tell current or prospective employers about this condition? I am working on reducing my level of stress but it just seems that my life is always stressful. Does fibromyalgia worsen stress, does stress worsen fibromyalgia, or is it a vicious cycle? I've lived with this beast for years without knowing what it is. Now that I know what is wrong, how do I deal with it?

Any input would be greatly appreciated. Thanks in advance.

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Specializes in LTC, MDS, Education.

Don't tell your employer. It isn't their business and they don't really care. Trust me on this.

Find a doctor who specializes in fibromyalgia

:nurse:

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I know what you are going through, I've been living and working with FM for years. It took several years of Dr visits, testing, and trying many different meds before they finally diagnosed me with FM. I tried Lyrica, it helped a little, but I didn't like the side affects. I am very sensitive to meds, so I had to stop taking all of them. I found a herbal supplement that helps me, called Zyflammend. You have to take it for well over a month usually before you notice an effect. My doctor approves of it, so if you should try it, run it by your Doc first. Eat an anti inflamatory diet also.

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Specializes in Med-Surg., Agency Nursing, LTC., MDS..

I recommend not telling any prospective employer. And I would get a referral for a good, (do your homework) neurologist who treats F.M., or a respected Rheumy.who treats F.M. Some doctors have limited knowledge and therefore,limited experience w/ treating F.M. This disease is fast becoming of interest to neurologists as it is not merely a disorder of the muscles and other soft tissues,but one where other body systems show symptoms,like G.I.tract,vision,hearing and so on.

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i haven't had a major flare in a couple years until today, right now i hurt like heck, and just can't lay in the bed anymore today. i've seen the rheumatologist, but pretty much have only used my pcp for the last 5 or so years since i got my symptoms under control. so def go by what your doc says.

a good book is living well with fibromyalgia from the arthritis foundation. i have a jacuzzi tub, i take one every morning or pretty much 360 out of 365 a year, it helps to loosen everything up. i get a massage every two weeks usually (tomorrow makes three since my last one due to life happening--i wonder if that has a co-relationship to my flare)some insurance will pay, some won't, mine quit, but the $40/massage is worth it for me not to have to take ibuprofen, narcotics, muscle relaxers, etc very often (some people have to take them from time to time, and admittedly i ended up taking a lortab today, i'm off until monday, but i still don't like the way they make me feel-can't drink either-1/2 glass of wine and i'm three sheets to the wind, lol). i do some gentle yoga as well. i used to go to pt, but found the massage therapist was just as effective for me.

good luck, and try not to let the fibromyalgia define you,( it's hard when you're in pain, i'd forgotten how bad it could be) i did that after my diagnosis, once i took control of my treatment and learn how to manage my symptoms it sort of empowered me.

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Specializes in Med-Surg., Agency Nursing, LTC., MDS..
i haven't had a major flare in a couple years until today, right now i hurt like heck, and just can't lay in the bed anymore today. i've seen the rheumatologist, but pretty much have only used my pcp for the last 5 or so years since i got my symptoms under control. so def go by what your doc says.

a good book is living well with fibromyalgia from the arthritis foundation. i have a jacuzzi tub, i take one every morning or pretty much 360 out of 365 a year, it helps to loosen everything up. i get a massage every two weeks usually (tomorrow makes three since my last one due to life happening--i wonder if that has a co-relationship to my flare)some insurance will pay, some won't, mine quit, but the $40/massage is worth it for me not to have to take ibuprofen, narcotics, muscle relaxers, etc very often (some people have to take them from time to time, and admittedly i ended up taking a lortab today, i'm off until monday, but i still don't like the way they make me feel-can't drink either-1/2 glass of wine and i'm three sheets to the wind, lol). i do some gentle yoga as well. i used to go to pt, but found the massage therapist was just as effective for me.

good luck, and try not to let the fibromyalgia define you,( it's hard when you're in pain, i'd forgotten how bad it could be) i did that after my diagnosis, once i took control of my treatment and learn how to manage my symptoms it sort of empowered me.

i'm still in the learning stage,that's for sure. i've yet to get an official dx., but that's okay, the other issues have my attention. i know there's no cure anyway. or so they say. i was feeling so much pain last month, that i broke down and went for a massage, but it was'nt relaxing at all, just kind of painful all over. i was hoping it was healthy pain ,to break up the trigger points. now that we've had mostly rain for the last week, i'm in a lot of pain all over the place and with the r.a. too ! yesterday i slept most of it away...

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Specializes in Gerontology, nursing education.
good luck, and try not to let the fibromyalgia define you,( it's hard when you're in pain, i'd forgotten how bad it could be)[/i][/b] i did that after my diagnosis, once i took control of my treatment and learn how to manage my symptoms it sort of empowered me.

thank you. right now it's kind of hard for me not to let it define me. now that i realize fm is part of who i am, it's difficult not to let it be the primary focus of my thoughts and self-concept. i don't take anything for the pain but mostly that's because nothing seems to help. nsaids like acetaminophen and ibuprofen don't do much for me and i hesitate to take naproxen because of problems with lower gi bleed. it's bad enough that i have a touch of ibs related to the fm without worrying about lower gi bleed.

have had to take a little time to reflect inward and cry. i think i've needed that, though.

not real sure if the gabapentin is working. how long does it usually take to see results? days? weeks? i've been on 300 mg tid the past ten days or so and don't see a lot of relief but maybe it takes time to work. still c/o neuropathy and have had a difficult time with my wrists the last few days. that's depressing because i enjoy various arts and crafts and it's frustrating to not be able to hold a pencil long enough to draw something or do fine detail work in any medium.

my family is wonderfully supportive and make sure i get the rest i need. sleeping is sometimes my best respite from the pain. doggone it. animal-smiley-037.gif today it's humid and rainy and my shoulders and back ache.

thank you all for your responses. it helps to know i'm not alone out here.

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Specializes in CCU, OR.

Start here

http://www.fmaware.org/site/PageServer

and

http://www.fmnetnews.com/

They are the two best sources online.

Remember that routine, balanced diet, and most important, exercising- I know what you're thinking- are the best things you can do to help yourself.

Those sites may be able to help you locate local "good guys". there are still plenty of rheumatologists and others who believe that FM is a bunch of junk. Find a pain management specialist who can help you. The best kind to find is one who helps manage al your symptoms and will give narcs if you need them. Try TENS units, accupunture, aquatherapy, find a massage therapist who knows about FM patients.

And contact me all you want- I've been official since 1995.

Hugs and best wishes,

Helga

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Specializes in Gerontology, nursing education.

Thank you! I don't know why I didn't see your post until now but I appreciate the help.

Have had two fibro flares in the last couple of weeks. One was related to stress and I ended up spending a weekend in bed. The other---I'm not sure what caused it but I could barely walk the first day.

Went to my provider today and she gave me samples of Savella™. Gabapentin and Lyrica® did not work for me. Gabapentin had an adverse effect on my mood---though the pain was lessened than with Lyrica®. On Lyrica®, my mood was better but the pain got worse (and I had my two flares), I had problems with swelling in my hands and feet and gained 13 pounds. :down:

My provider has said she will refer me to a pain clinic if the Savella™ does not alleviate my symptoms.

Despite the pain, I took my two dogs on a walk this afternoon. It was okay.

The last several weeks have been extremely difficult. My family is supportive but I still hurt.

I will definitely PM you, Helga. Thank you again.

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I have lived with this "monster" for about 9 years now and I can't lie everyday is a struggle. I was married but now separated and living back home with my Mother. I lost a good job because of it but found a doctor who understood. He got me on medication and now for the last 2 years I have been going to school to finish my degree. I don't know how you feel about God but let me say He helped me in my darkest hour to not take my life because of the pain and not sleeping. But as I said, the right doctor is a blessing. I have found you really need to eat right. Not 3 big meals but graze during the day. I exercise when I can't sleep and walking on the treadmill really helped me get tried enough to fall and stay asleep.:yeah:

Good luck! You can manage this "monster"!

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10 years so far....Vitamins, lots of water, daily exercise(walking is best), low stress, change your job if its too horrible, benadryl 25 mg each night at 8:30 for a good sleep by 10, stay away from night turn if possible. Yeah I had the rheumatologist, and the neurologist, they to me were a waste of time. There is no cure, and you have to be your own advocate and do what makes you feel better. I have chosen not to take lyrica. I choose to take advil, tylenol in any form does not work for me. Warm baths are very good for the jerky, muscle tension. I have had some injections on my right hand, but they do not seem to last long anymore. Its a good idea to have your vitamin D level done, alot of fibromyalgia patients have oseopenia or porosis. Im looking forward to fosamax, lol. That sounds sooo bad! Hey, everyone has something, so you have to choose to fight this!

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Specializes in LTC Family Practice.

I also have Fibro, it came with my Epstein-Barr and my Lymes. I find that what really helps is diet, no wheat, sugar, dairy and plenty of rest.

Some days I can tell if I'm getting a flair of EB and I've had Lymes so many times that I have re-fillable antibiotics and I also have to take Diflucan when on the ABX's.

Try looking for an alternative Doc type.

Google Lymes and EB forums there are lots out there and you will find a lot of help for your fibro.

Good luck

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