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I'm Newly Diagnosed
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luv2readtx posted:
Hello all,

I am 38, female & was just diagnosed with Fibromyalgia last week by a Rheumatologist. It's such relief to have a NAME for what I have, but with it comes so much STRESS. I had the deep muscle pain, I had all 18 trigger points, the debilitating fatigue, the "fibro fog", etc. My husband, who I love dearly, just isn't sympathetic. "You complain all the time, do you really hurt that bad all the time?" is just one of the things he'll say to me. He just doesn't "get" it. I'm on Lyrica (my pcp had started me on it 2 months ago), Tramadol for pain, & Flexeril to take at bedtime. Today was a bad fatigue day and I slept all day long. On top of everything, I just started a new job and I work 4-midnight. The Fibro Fog is just TERRIBLE.

Do any of you have any tips for me? and/or some title of good books/resources I can get?

thanks!
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booch007 responded:
Good morning,

I am so glad you found us. It was way into my path of getting care and then finally the name to it, that I found this board and have not left since.

Under resources is our toolbox, it contains pages and pages of tricks that have helped us to have a life. I remember complaining so much also when I was on the "figure me out stage" almost like I was sharing it to validate it.

I don't "share" that info anymore unless in a flare. My DH is dealing with his own issues and cannot carry mine. The greatest thing I did to help him turn the corner and SEE my iisues was to bring him to a trigger point injection appointment I had. As the doctor injected each spot " they became real" I thought I would die in the beginning and he just said "I am so proud of you"......B I G...

He became my champion and defended me to my son's who were merciless against me, with jokes and picking on me. They quieted down immediately. I was validated.

I have a book called FM and Chronic Myofascial pain, a survival manual by; Dr Devin Starlanyl. IT is priceless to me to help with bad spots and treatment. A self help manual. In the doctors office when I shared my biggest physical limitations she opened a book and said...THIS? and it was YES...and THIS? and YES....so I went on Amazon.com and I bought the medical book (now in 2 books) $$$ and dry reading but I had the BOOK....I had the medical book to share with my doubters.

I have had MD's with complaints and given them the books...and got them back after they helped. Funny was, that I used a dollar bill or a five dollar bill as a marker for important findings for me. Their amazement was the $$$ inside, I said don't take it. Just shows you ***priceless*** is how I felt!

Dr P here also has books he has written and is so worth looking into the thread/discussions under him to learn. Again, PRICELESS.

We are open 24/7 and are here as your shoulder, so now you can give DH a break. He is never going to understand you totally, but with sharing the education you are going to find is all the more important for your future. IT will get better.

This is a trial and error path, the Lyrica may not be helping you as much as you think but making the fog worse? The tramadol may make you sweat and not sleep well, the flexeril may give you a hang over and you can't start your day.....these are all things that can be. YOU need to journal and see what is going to work for you.

It is over 15 years I am fighting this battle and there are some who take nothing and some that are way up on the med scale, We are all different....

I am a Soma (instaed of flexeril it did nothing for me) Tramadol, Savella, Vit D, Ca, Mg (250 2 x a day)CoQ10 girl. My little 12.5 of savella was the bow on my box...I work 4 days a week and am moving almost the whole time. I repeat my meds at lunch with the soma and tramadol, I do this as I seize up in the car going home after so much walking.

There is a story on the net called the "spoon theory" it was written for the Lupus patients but it matches here too. You might want to find it. Good reading.

So, I am glad you found these wonderful people who will always understand you..always have a shoulder to hear the frustration, especially if you have not paced your day (spent your spoons..correctly).

Read everything on this forum, it is good stuff and I wish you all the best, actually the best is yet to come. You have now been given the name......take it from there. learn and empower yourself. I was once so bad I was leaving, had my suicide plan and was ready....not doing this the rest of my life. I saw a few more docs and found I needed to rehydrate myself, eat green and mean and needed the support of the fmily here and I got through.....and I am the best I have ever been. I just needed a good tune up...............and I needed to DO IT!

I would say I have about a 9 hour wellness window to get things done and have a good life, where the dragon is behind me. Distraction is a powerful med. Take care Nancy B
 
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painfullyexhausted responded:
I think one of the best books that you and your husband can read together is called Living with Fibromyalgia by Dr. Mondell. He has stories from a couples point of view and what they've experienced. It really opened up my husband's eyes. He was supportive but then he read the book with me or I should say I read to him lol. His exact words were "I had no idea that this is what you were going thru". It was live changing because he really got it and has been amazing every since. Like I said, he was supportive before but this book really opened his eyes. Nobody will truly understand what you're going thru unless they have FM but a little support from loved ones is priceless. Get as much knowledge as you can. This is a great starting point. You will learn alot by just reading and chatting with everyone here, it's very helpful to just be able to vent to others that do understand how you feel. Best of luck.
 
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Olliesluv responded:
hi and welcome. I'm so sorry you were diagnosed with this but I understand your relief to finally have a name. it took me several years and several doctors to finally get that name for all the suffering. My husband was like your's in the beginning, but he'll get better with time. Mine had to see some bad flare-ups and try not to hide how you feel, it's good to talk about it. I personally hate taking meds so I try to deal with as much pain as possible before taking anything. Lyrica and any of those meds for FM just didn't work for me, I always just stuck to the tramadol and tylenol, it always worked best for the pain and didn't make me more tired. I also take xanax for anxiety and panic attacks, but only as needed, being careful not to abuse it. if I can get by with some ibuprofen, I take that but the older I get, the worse my symptoms are and they've really gotten bad in the last two years with many more pain areas, facial pain, jaw pain, throat pain, and sometimes I can't talk or form words right. what's driving me crazy is the numb area's and the tingling limbs, I drop stuff all day! so I've had to increase the dose of tramadol and more often, but seems to be helping a lot. It's trial and error, and what works for you may not work for another. It's a strange thing, but I wish you good luck and hope you feel better.
 
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jillylin responded:
Hello,
the fibrofog is so scary so I feel for you. I got my diagnosis in January but have yet to have it 'officially' confirmed. I'm like you,m glad I have a name for whats been happening to me.
You'll get loads of tips here
Hugs
 
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luv2readtx replied to jillylin's response:
Thanks you everyone for your responses. It is encouraging. Sorry it has taken so long for me to respond. Things are bad. My fibromyalgia is so bad I can barely move. I don't see my Rhematologist until May 24th. We are waiting on the rest of the test results to come in. The test results that have come in, have show an elevated Liver function and an elevated C-Reactive Protein Level. I have no idea what those mean. But I can tell you that my feet swell severely daily. When I mentioned it to my Rhematologist, he refused to address it and said that was for my pcp. But my pcp has run every test under the sun and can find NOTHING. So i've made an appt with an Internal Medicine Dr for next week to get a fresh new perspective.

I just started a new full time job in Medical Records at a local hospital. It's the easiest job ever - just scanning in charts - but I can barely function and focus at work. The charts feel like a hundred pounds, and my hands feel clumsy so it's hard to turn pages, etc. My boss just told me today that if I need my hours reduced to let her know because they are able to tell I'm having trouble focusing and getting my work done. (Yes they know I have Fibromyalgia). I'm so depressed. I just go to work, come home and am so sore and so swollen (my feet) that I can do NOTHINNG. What should I do? oh yeah another troubling sympton is my vision. Every so often my eyes get blurry, almost like there's a film on them. It will last maybe 30 mins to one hour then POOF gone. I have dry eyes and do put drops in all day long.

sorry for the long and whining e-mail - but I'm very very depressed. I can't believe that I'm having trouble doing the easiest job EVER & can't do it.
 
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luv2readtx replied to luv2readtx's response:
I forgot - my Rhematologist told me to walk daily. How can I?? My feet are swollen up HUGE??? I've even gone to the ER over my feet & every test is normal - my chest x-ray is normal (no fluid around the heart etc.). I'm so tired of bad bad dr.s'. One dr in the ER told me Fibromyalgia is NOT a real illness! Then none of the rhematologists here in town took my insurance, so I have to drive 2 hours to see this one. I've only seen him once, but I'm kinda questioning his bedside manor. So tired of rude, condescending drs...
 
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Olliesluv replied to luv2readtx's response:
I'm so sorry luv2readtx, I really feel your pain. I was diagnosed in my late thirties and I went through the same thing. Rude, sarcastic doctors who don't think FM is real. You have to just keep trying new ones until you find one you like and who is understanding. I finally found one who is wonderful (took 6 different docs and several years) I've found that the specialists aren't any better or can be worse. FM really sucks and it's a catch 22 when you're told to exercise but can't because of symptoms and pain. What has really helped me is....taking charge of my life, pacing myself everyday and saying "no" to others, I write everything down and keep pen and paper in my purse for the fibro fog, and most of all...don't feel bad or guilty for the things you can't do. It's NOT your fault, take it a day at a time and you can get through it. Hoping you are having a great day today, Olliesluv


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