What did you do after you were diagnosed?

[nvdiver]

I was relieved to know there was a name to attach to it. Having that gave me something to tell those who asked about the pain I suffer, it is the why that is baffling to all of us. There is frustration in knowing that it is a "maybe" that I will find a way to block the pain, not get rid of it. I haven't taken any of the lyrica or cymbalta type drugs yet, but I imagine they will come as my doctor and I start down the path of discovery of what will work for me if anything.

I was surprised at the fatigue that I have experienced with it. Some days it seems that I can't get enough sleep. Last night is a good example. I slept for 12 hours and still feel like I could sleep some more.

One thing I am being able to control most of the time is the anxiety/moods, but that of course is done with prescription drugs. Again it is nice to know that there is a reason for it.

It is a new "adventure" for me, one of many that I have during my late 50's, some voluntary and some not.

 

[tina5160]

I think what has made it more difficult to accept and not look for other answers, is that the information from the doctor said that it is pain in the muscles and joints that can’t be attributed to something else. I think it makes it sound like they gave it a name because they can’t pin on anything else. Not only that but the way the Dr told me that he thinks the onset of a lot of added stress triggered it; my brain has been in “relieve tension and stress and it will go away” mode.

 

[Revy]

I just received the diagnosis today; I am relieved for the most part. I feel having an official diagnosis some how makes what I am going through real and not just all in my head. For the past year I have felt like I've slowly going to crazy since I am only 28 thinking there is no way I should be feeling the way I do at such a young age.

I am also very thankful, while my doctor knows very little about fibro, I am his first patient with it...he isn't questioning my sanity or denying fibro is real. I am going back to discuss meds and what happens next, he is taking the next couple days to get up to speed on the disease. Reading what many other goes through just getting a diagnosis then dealing with doctor denial...I don't know how I would be handling things if I had that to deal with on top of this pain and brain fog.

For the past few weeks I've been researching the basic information of fibromyalgia and today I've started looking at fibro blogs and looking for a support group. Currently, I'm looking into coping methods, tips, and ideas on making day to day life with a toddler more bearable. I see no point in being angry and ignoring my pain, so I am trying to figure what to do after being diagnosed.

 

[kat744]

When finally the doctors told me what I was suffering from, I was truly relieved because now I could manage my sickness better. I had never heard of this disease so I got my family online to dig for more information.

It took a while before I completely understood the sickness and am still learning new information about it especially after joining this forum.

 

[LivetoErr]

I didn't do anything when I was diagnosed with Fibromyalgia. It was just an addition to everything else I'd been diagnosed with.

I started with some sort of swollen gland infection when I was 8. No one had a clue what it was or how to treat it. I just looked like a chipmunk with swollen glands. It wasn't mumps it and it wasn't mono. They had no idea what to do except give me antibiotics. Then as suddenly as that appeared it disappeared. Then, I started showing symptoms of Reynaud's Disease. My fingers, toes and knees would turn purple whenever I was cold and/or stressed. Then, when we were visiting the Alamo, I got some strange pain in my neck. I couldn't lift it and all the pictures I have of that trip, my neck is against my chest. They diagnosed me with Juvenile Rheumatoid Arthritis and said I would most likely out grow it. I outgrew it alright, it turned into Mixed Connective Tissue Disease. Shortly after starting Prednisone I was diagnosed with diabetes. They figured that would go away when I decreased the Prednisone but it hasn't. After the diabetes, it was Fibromyalgia.

I'm sure I have diabetic neuropathy in my feet. I have numb heels and if I lie on my back (my favorite way to sleep) I have to raise my feet. There is no way I can have my heels touch the bed. The longer they rest on the bed, the more numb they get. I can feel it, somewhat, when I walk but it isn't as bad as when I lie down.

So, really, the Fibromyalgia diagnosis was just another explanation for why certain areas of my body hurt as well as other things.

 

[Ladybug32]

When I got my diagnoses, it was a relief to know I wasn't going crazy..lol..My Rheumatologist then sent me back to my regular doc to see if I had a kidney infection.I did.The doc said I have sever kidney infection..got my meds filled then went home.I got on the internet after I took my meds. I have to say it helps if you got someone that stands by you..For me it is my Hubby of almost 15yrs. RESEARCH is the best thing you can do and do tons of it..Some sites will tell you more than others.

 

[Jennyflower81]

Once I was diagnosed, I felt a bit disappointed actually. I had requested that the rheumatologist check me for connective tissue disorder. The reason for this was because my best friend had just been diagnosed with EDS and I shared similar symptoms with her. In my mind, it had to be SOMETHING ELSE. I know that fibromyalgia can be extremely debilitating to some people, but my gut was telling me that me issues stemmed from some other reason. I did so much research online, requested testing for Lyme, which was negative 3 times. So I finally asked to be sent to a geneticist, which resulted in me getting a diagnosis of EDS. I thought it was a shame that the rheumatologist didn't recognize my condition. My fibromyalgia is a direct result of the EDS. I also have developed osteoarthritis, scoliosis, tinnitus, and hyperacusis I'm trying to make the best of it, and I can feel a bit more "at peace" knowing the cause of my illness. Sometimes the worst part of having fibromyalgia is wondering WHY is this happening to ME?

 

[Jenny Heart]

I ask a friend of mind that I knew had Fibromyalgia al about this condition, and how she was coping with all the changes to her body. The women I talked to had it bad especially in her neck if I remember correctly. She seemed to struggle daily with this condition, and when she found out I had this condition, she was empathetic about me having the same condition.

 

[Cleopatra]

I had been suffering from low back pain for abt 18yrs. I fell down the stairs about 3 yrs ago which made things worse.. Have had aches n pains n get really tired even if i havent done much. Doctors just keep changing my medication from one anti-deprressant to another, they dnt help much. I was then sent to Rheumatology Department at the hospital to see a consultant where i was diagnosed with Fibromyalgia. He said to try different medication i.e anti-depressant which will not always work try and do some gentle exercises. Now iv started to get these vibrations in my pelvic area and i don't know if this is to do with what i have. Has anyone had or have these vibrations. I still have to go and see my dostor about it.

 

[NapawallaGirl]

I am still not sure I believe it. I had been masking my aches and pains with 3200mg of Ibuprofen a day for a very long time (which just took the edge off so I could make it through a day at work). Doctor told me to CUT IT OUT with that much Ibuprophen, so when I went to see her next, I stopped all pain meds and muscle relaxers for two days so I could very specifically describe my pain, which nearly had me incapacitated by the time I got to her. She diagnosed me with fibromyalgia using the tender points test, after a blood test in which I believe the CRP results may have been skewed due to my excessive use of the NSAID, showed no inflammation.


I took her advice and lowered the Ibuprofen to no more than 1600 mg per day. She diagnosed me with FMS, and put me on Nortriptyline. After two weeks, that only made me feel worse, my already frequent anxiety attacks turned to every day, and I was extremely sluggish with no pain relief. Now for a week I have been taking low dose, 50mg/day, Lyrica. I have had no response to it except a little dizziness, so I called the Dr. office today and left a message. A short while after I called, I got a call about my most recent lab results (I have hypothyroidism) and the CRP, and low and behold, is high.

I am just hurting so badly and I want relief. I've tried to start walking, so we will see how that goes. I must say I am frustrated and sad that there is really nothing out there that seems to work on FMS. I feel like I'd rather have something they could just say, "oh stop eating this, or start taking this" and Ta-Da...I get better. I'm only 42, and I get so tired of hearing the "you're too young to hurt like that. Wait until you're my age!" So let me just say, if it only gets worse, I don't want to be "your" age.

No one I know really understands or wants to engage in conversation about it with me, including my husband. The only other person I knew who had this illness went a little mad, was on 30+ different meds each day, and she lost her job. Feeling Frustrated...

 

[1sweed]

Napawallagirl,
We hear you and we are listening. Please tell us all about anything you wish to say and we members will offer you lots of encouragement and support. Facing the pain is the hardest part of fibro and I hope your doctor provides you with added support in returning your calls and being there when you need her. Keep coming back and ask questions and post replies where ever you like.

 

[NapawallaGirl]

Napawallagirl,
We hear you and we are listening. Please tell us all about anything you wish to say and we members will offer you lots of encouragement and support. Facing the pain is the hardest part of fibro and I hope your doctor provides you with added support in returning your calls and being there when you need her. Keep coming back and ask questions and post replies where ever you like.

Thank you for letting me air that out :wink:

 

[1sweed]

Your very welcome. Please know we care and are willing to listen and help through our words of support when ever you need us. Look forward to reading your posts.

 

[Chrispy93]

I was going to the chiropractor durring lunch and leaving work early to go to physical therapy, after i told the 4th therapist that i was felling worse after treatments (always felt worse after a massage too), she refered me to a rheumatolgist. She then refered me to a doc specializing in fibro. For that inital appt, i had to leave work early while all my coworkers were meeting up after work for a purse party. (fake designer bags. not that i wanted to buy one, just went to be social). Once examined, the doc so casually told me i had fibromyalgia; i was a mess. I didn't stop crying. Like a robot i composed myself and went to the party. Comments were made that i was late and missed the "sale", and one particular girl said under her breath, she's late every day, princess gets away with it, she can do no wrong. I was so hurt by that comment. 8 years later, i still am. Anywho, i was distraut after being told i had fibro. Finding out i had something wrong with me that no one really knows how or what it is and that nothing really helps make it go away, was devistating to me. I was already dealing with depression. Now i had the 2 most illusive conditions. Its all in your head. your too young to feel this way. just push through. smile. you should smile more. how come you could do that a few months ago, now you say you cant? wait until your my age. ugg. I agree completely with Napawallagirl; "Wait until you're my age!" So let me just say, if it only gets worse, I don't want to be "your" age." I tell them i feel like that now; they have no responce. I just want to tell everyone to go suck it (not here). Im done trying to explain myself. i should add that i currently have no friends, no social life, no job, im a hermit. consequently, my pain is less.