Diagnosed after many years

[patty9755]

I am so happy to discover a place to talk about this terrible malady with people who know how I feel. Thank you for accepting me. I have been seeing the same doctor, a general practitioner, since 2011. I have basically complained of the same symptoms all these years. After my quarterly visit Monday, I noticed on my paperwork he had a diagnosis of fibromyalgia. I was unfamiliar with this, and I spent some time when I got home learning about it. I was shocked to see I had every single symptom. I am 62 years old. I have had IBS since I was 12, muscle spasms in my back for nearly 40 years, restless legs syndrome for almost 20 years, and general fatigue for as long as I can remember. The other symptoms have appeared over the years. My doctor has treated the symptoms lightly. I would like to know from the people on this forum if I should see a doctor who specializes in fibromyalgia. Should I be feeling a little angry that he didn't recognize the combination of my symptoms as fibromyalgia sooner than he did? I had blood work Monday, but I have not received results yet. Can someone tell me what to expect? The pain, anxiety, sleep problems added to the RLS and IBS have diminished my quality of life for so long. I really need some advice, please.

 

[Tipnatee N]

That's a lot to be said in a single reply , but please take a deep breath . I know how that feel when I was first been told and diagnosed with fibro I felt many mix feeling with loads of question flooding in my head I didn't know how or where should I start , what to expect, what should I do. And often the answers are the one you need to prepare to accept which also can be stressful and that will causing you to feel even worse if you're not careful that alone might consume you. So please take a deep breath!. There're more and more people being diagnose with fibro now than ever , simply because many years ago it was so hard to dianose and been so easily dismissed . With doctor that aren't familiar with it it was almost impossible to tell. So I don't think getting mad at them is going to help. But finding another doctor who specialize in fibro will. The situation with fibro patients can be much better in the hand of doctor who treated enough fibro patient to know how to deal with multiple problems at once without giving you more grief than you've already experiencing. As far as your question of what to be expecting, you can read many articles in this site or search for the pacific answer that you need . Each fibro for each person can be many variety of differences, yet many are very commons enough for you to mapping your own situations . Keep thinking possitive , and keep talking more about your self and others. . That is how I manage my self till now.

 

[vickythecat]

Many many many doctors make this 'mistake' - even if it can be considered a mistake. Many doctors are also not very well aware of fibromyalgia and it is a diagnosis based on elimination. Just because you had IBS and fatigue for many years, this does not necessarily mean that you also had fibromyalgia.

I've been to the GP quite a few times with extreme fatigue and/or IBS and/or neck & shoulder pains, and after blood works coming back perfect, he often told me that it was seasonal and it would pass. Or I'd be referred to physical therapy, get some meds. And yes, after a while my complaints would become mild, but after a few months, I'd be back in his office with the same complaints. This was in the 90s and I am sure most GP's had no idea fibromyalgia even existed.

My advice for you is to talk to your doctor about it, talk about a possible fibromyalgia diagnosis (make sure you rule out everything else) and get referred to a rheumatologist and/or pain specialist, if there is indeed serious reason for a fibro diagnosis.

And to be honest, even if you do get the diagnosis, not much changes. You just have a name, but fibro is such a wide-spread, weird, illness. We, the sufferers, do not understand it (can all your pains be blamed on fibro? or is it just pain pain? who knows....), doctors do not get it, the world does not get it...loved ones do not get it.

So try to put the focus on your overall well-being = being positive, focusing on what you enjoy in life, what you are good at, the calm and happy moments in life. all the best

 

[Brovane]

I am so happy to discover a place to talk about this terrible malady with people who know how I feel. Thank you for accepting me. I have been seeing the same doctor, a general practitioner, since 2011. I have basically complained of the same symptoms all these years. After my quarterly visit Monday, I noticed on my paperwork he had a diagnosis of fibromyalgia. I was unfamiliar with this, and I spent some time when I got home learning about it. I was shocked to see I had every single symptom. I am 62 years old. I have had IBS since I was 12, muscle spasms in my back for nearly 40 years, restless legs syndrome for almost 20 years, and general fatigue for as long as I can remember. The other symptoms have appeared over the years. My doctor has treated the symptoms lightly. I would like to know from the people on this forum if I should see a doctor who specializes in fibromyalgia. Should I be feeling a little angry that he didn't recognize the combination of my symptoms as fibromyalgia sooner than he did? I had blood work Monday, but I have not received results yet. Can someone tell me what to expect? The pain, anxiety, sleep problems added to the RLS and IBS have diminished my quality of life for so long. I really need some advice, please.

Did he not discuss the diagnosis with you? By your wording, it sounds like you only found out about the Diagnosis by reading the paperwork.

 

[moe1959]

Blood work? Probly to check for other things t rule out you may have more than fibro going on. Like , arthritis, Lupis, any other auto amune. Justa wild guess. Consider getting a copy of your order, lab that is.

 

[patty9755]

Yes, I had labs. The nurse called and said my labs looked OK, except it showed my kidneys are in distress. She told me to drink more water, that it could be I am dehydrated. I have noticed my IBS and Restless Legs Syndrome flare up, as well as sciatica all at the same time. I just assumed my hips hurt because I sleep on my side. I have had upper back, neck, and shoulder pain for many years. I have two herniated disks in my lower back, and I take Norco every 6 hours. Strangely, it doesn't stop my upper back, shoulder, and neck pain. Doesn't really do much for the lower back pain. Standing up cooking or washing dishes is excruciating. I don't know what to do. Just take it one day at a time, I guess.

 

[Karen44]

Hi Patty,
I am new to the website also. My doctor is trying to deside for sure if I have fibromyalgia but most of my symptoms seem to say "yes".I've been seeking an answer for over two years and probably longer. I do not know of any doctors that specialize in Fibromyalgia but good luck in finding one.