Old 09-02-2013, 05:41 PM #1 (permalink)
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Default Unexpected Diagnosis

Hi. I was just diagnosed with Fibromyalgia on Friday by a Rhuematologist. I am 41 years old, married almost 20 years, and have 3 children ages 8-23.

I was surprised by this diagnosis to say the least. I had heard of Fibromyalgia but not thought about it in regard to the way I was feeling. I had equated this condition more with that of Rheumatoid Arthritis.

For many years now I have been struggling with fatigue. Dr's always equated it to depression, anxiety, and being overweight. This past year my fatigue has gotten so unbearable that I sometimes have been unable to do even small things like go to the grocery store. I have seen so many specialists: internal medicine, gastro, neuro, sleep specialist. So many blood tests, I have had my vitamin and mineral panels run three times this year and my thyroid tested for times in the last two years. Everything came up fine. Due to my most prevalent symptoms (tingling, fatigue, itching, weakness, dizziness, coordination and memory issues, and generalized pain) I thought I was headed to an MS diagnosis. When my MRI came back negative for lesions last month I had about given up. I still had this rheumatology appointment in the future but almost cancelled out figuring the PA at my Internal Med Dr was right when she said it was all in my head (well, she said my depression was causing my pain). I also tested negative for RA, Lyme, Lupus, as well as any of the other Auto Immune markers (in total I have had over 60 tubes of blood drawn in the past 6 months). I have had a lot of lower abdominal pain and lower back pain in the last year as well (to the point where I thought my Ovaries were on the verge of exploding) but 3 internal sonograms revealed nothing "that would explain the extent of the pain that [I am] having". My gyno just said take 4 ibuprofen every 6 hours during my period to control bleeding and pain. However, I have the pain almost constantly. At one point, I thought I had kidney stones as well it had gotten so bad.

So on Friday when I got this diagnosis, I was surprised. The Dr explained a little to me and together we decided I would start Savella. I had been on Cymbalta prior to this (from the Internal Med PA for that depression) and did not like the detached feeling from the anti-depressant part of it. Lyrica was ruled out because the Dr said it can cause weight gain.

So far ok with the Savella (only three days in to the titration pack) as far as side effects. Just now, I am noticing the pain more it seems. Now that I have had time to look into Fibro more I realize that so many of my symptoms are classic symptoms of this condition.

My issue now is how to explain all of this to my husband, my kids, and my boss? So much is unknown about Fibro and a lot of the internet info out there makes it sound like a Psychological problem that manifests itself physically. A lot of people don't and won't believe that makes it "real". How do I tell people in such a way that they realize this is a true illness? This is weighing heavily on me.

Thanks for listening. I am definitely just now learning my way in all of this.

ETA: I have many other symptoms as well and the Dr did do the pressure test (I had no idea what she was doing at the time) right before diagnosing me so I must have failed that. After she told me what she had done with the pressure points and why I said how odd. For years my husband will squeeze my thigh thinking it tickles but it is always so painful. He never gets it. I always thought he just doesn't know his own strength. Turns out, I am more sensitive. I can think of a million times too where he sits on my lap or one of my kids touches me in a certain way and it hurts where it would not hurt another person. A lot makes sense now.
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Old 09-04-2013, 01:02 PM #2 (permalink)
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Hi, this is diana and I just want to let you know that you are not alone! Having said that here is my story that is not so different from yours. In 2008 I had a total hysterectomy (I also had the exploding ovary feeling) and was told it was endometriosis. Almost immediately after the hysterectomy I started having pain in my hip and back which radiated down my leg. They did an x-ray (and shortly after an MRI) but it showed no blood clot or pinched nerve. I struggled with this for several months. Every time I had a bad "flare-up" in my back and my neck I went to doctor received pain meds and they suggested physical therapy. It didn't have lasting effects. Then I had the epidural shots. Joined a gym to do water aerobics and yoga. Also tried a plethora of meds. I started taking Cymbalta and everything was kind of under control. Then last Sept. I was in a car wreck. An elderly man turned in front of me and I hit head on. I tensed with my whole body and that night the pain was bad in my neck and shoulders that I went to emergency room. I received muscle relaxer and pain meds. MRI did not show whiplash thank goodness but the whole thing was enough to really bring on the ferocious fibro pain. Finally last month my doctor recommended I see a neurologist. I am now on Lyrica (taking 3xday, starting today) Boy am I dizzy! The neuro is going to do some testing of his own. So I will see where that goes. Sorry that this is such a long post but I wanted to let you know that it is a tough road but you are among friends here that understand.
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Old 09-05-2013, 08:50 PM #3 (permalink)
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Default Re: Unexpected Diagnosis

Hey Miller, your story sounds a lot like mine, specially the symptoms part. I'm sorry to hear you're going tru this, dealing with constant pain is never easy. The first person you should talk about this with is with no doubt your husband, after than both of you can figure out how to explain it to the kids. As for the boss... is it really necessary? Right now you need your husband's support more than anything, it'd be great if you could take your husband with you next time you go to see the rheumatologist, that way the doctor can clearly explain what fibro is to your husband and the fact this disease is real.

I was diagnosed with fibro quite recently as well, but to be honest I had been suspecting I had this for a very long time... since I was a teen to be more precise. When I finally got the diagnosis I felt a bit relief tho, up until now everyone thought this was just in my head. Some doctors even suggested my problems were imaginary and I was just looking to get some attention. A doctor was extremely rude and told me I had the medical archive of a 76 year old (meaning the file was really thick!).

You're not alone! I just wanted you to know that! This disease and the pain it causes is quite real. Try to talk about this with your husband as soon as you can, he will surely understand, best of luck!

Karen
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Old 09-06-2013, 09:27 AM #4 (permalink)
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Default Re: Unexpected Diagnosis

Thank you guys for the supportive comments. While I do not like the fact that you both have had similar experiences it is comforting to know I am not alone or crazy.

It is a good idea to get my husband to come to my next rheumatology appointment. I just hope he will go. It is not that he does not care just that he is self employed and taking the afternoon of for any medical appointment is not his idea of a good time. I have tried hard to talk to him about my diagnosis but honestly I am so confused myself that I don't know how I can give him any facts when I am having a hard time getting them myself.

As for my boss, I am on the fence about telling her. In my job I have the option of working from home if necessary and I would like to have that option if I have days where I don't feel well (I have a long commute and getting out of the car after that hour is painful). My Dr suggested I maybe think about cutting my work hours down so that I have more time to sleep and take better care of myself. My husband is on board with this but the way things are in today's world I hate to take a pay cut and obviously my medical bills are pretty hefty right now. It is a lot to think about.

My 8 year old son won't understand so it is pointless to worry him. My adult children (both girls) don't really need to know right away as they are both living away from home.

How do you both explain this to people close to you? My friends (and daughters) know I have been seeing a lot of Dr's and I know they are curious as to what I have found out. My big fear is telling anyone and having them Google Fibro only to get misleading info.
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Old 09-11-2013, 10:30 PM #5 (permalink)
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Default Re: Unexpected Diagnosis

Hey there! I really hope your husband can find the time to go to that appointment with you, it's really important to do this in this stage. But I do understand the lack of time can be a big problem! As for your job... well, I'm working from home right now If you can you should really consider that option, it's great you actually have that option! Not many people has.

Well, the first thing I did when I told my loved ones about my disease was to show them the facts. I tried to explain them the best I could, but you must face the fact that a lot people might not truly understand what you're going tru or the true nature of this disease. There are so many things about this disease that still remain a mystery. Just try to do the best you can Make sure to cover the symptoms well, like the fatigue and chronic pain, so they understand better the whys of this and that.
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Old 09-12-2013, 07:37 AM #6 (permalink)
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I had a bit of a meltdown the other day. I was exhausted as this is my son's first full week of school and we are on 5 hours per week mandatory OT at work. Therefore I have to be into work at 5 AM so that I can leave at 2 pm and be home when my son gets off the bus. Where the school week falls into it is that my son has ADHD and several learning disabilities. He often has the regular homework the rest of his class has plus additional work that he did not finish during the day. Basically we spend 2-3 hours per night doing homework when both of us are already emotionally and physically exhausted from our day. I have to sit right next to him when he is doing this work or it will not get done. My DH doesn't have the patience honestly (I barely do and I feel sorry for the poor kid).

Anyway, the meltdown came because I was exhausted and my 20th anniversary came and went last week without as much fanfare as I felt was deserved (dinner at Applebees with DS and a GC that a customer of my husband's gave us). I sent DH a long email from work explaining to him how I just cannot do it on my own anymore. For so many years he has worked multiple jobs and 12 hour days/7 days a week. I have not complained because for a long time he worked for his parents and they needed him. And a lot is just that he is a workaholic and hates to have any debt (having a mortgage drove him nuts). I told him now that we are older, have only one child at home (albeit he is twice the work both my girls were combined), and have our house paid off that I need help. He needs to pitch in. I said I have this condition that makes me hurt more and more exhausted than a normal person. I cannot help it and it is not going away. He needs to get that.

In better news, we are going away this weekend for our anniversary (he claims it was planned all along). He even asked his sister to watch our DS (he never asks her for favors like that) and he has helped a little more around the house without complaint. (and in his defense I do little for the outside house stuff with the exception of maintaining our pool and planting flowers) He seemed to kind of "get it" after I explained things this time.

Work from home would be great but it will only be an option once in awhile for me (even if I decide to tell my boss). They don't really trust anyone here to do it as a rule and don't have systems in place like other companies do to monitor productivity.

ETA: The Savella seems to be working well for me so far. I don't feel much for side effects (and I am up to 50mg twice a day for a week now) aside from occasional nausea. I do feel a lot less pain I think. The "exploding ovaries" feeling seems to have subsided lol. That is quite a relief. Still a lot of tingling in hands but I can live with that. And of course, the fatigue but maybe that will get better with time.
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Old 09-14-2013, 09:20 PM #7 (permalink)
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Your life has taken a change, my friend and not a friendly one. We are here to help. Ask any questions; not sure we or I, have the answers but we are willing to help.
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Old 09-14-2013, 09:24 PM #8 (permalink)
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I will tell you, my family could care less and could not even say the name! So I must be strong for myself and I will be. It's a self involved lot I've sired; my own fault.
I know I am the oldest person in this house, picking up after them but today, I put a stop to it! No more! It didn't go very well but....
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