New and just diagnosed

Hi, everyone, I'm so happy to have found this forum. I am 40, female, and just diagnosed last week. After lurking here for a couple of months, and reading about others' experiences in diagnosis I feel really fortunate to have only been at this 3 months. I admire those who soldier on for months, years. I have an excellent GP whom I've been going to for 10 years, so we have an excellent relationship, He knows me sick and healthy; he is also very interested in FM and is working together with the rheumatologist. I am considering treatment options and have an appointment this week to discuss them. The rheumatologist is so busy (we have an extreme shortage in Alaska where I live) that I'm going to have my GP as my primary FM doc as well. Because of this forum I was able to organize my symptoms for over two months in a calendar, which I never thought to do, to document the intense progression of symptoms. I really believe my quick diagnosis is due to the material available on this forum that helped me advocate for myself.

I'm incredibly addled today, and discovered "fibrofog," the great term that is new to me. So apologies if I sound a little rambly!

I have another family member who has FM, and it took her years and years to get diagnosed. She believes her FM was triggered by a case of fifth disease as an adult. I think mine may have been triggered by either a case of Coxsackie virus (similar to fifth's), or a car accident that gave me bad whiplash 16 months ago. After some fascinating consideration, I also think FM runs in my family. I can think of relatives who have had my symptoms before it was a known condition. I have pain points in my knees, ankles, feet, neck, shoulders, right collarbone, right hip, ankles, feet, outer elbows and lower back. (My exam for trigger points left me feeling absolutely nauseous for a whole day!) It's a lot worse in bed, and I toss and turn quite a bit in the night to start my day by waking fatigued. I have hand and wrist pain as well, and my fingers on one hand especially are swollen and seem frozen. I'm taking 50mg of nortryptaline at night, and extra strength Tylenol for pain; I hope to find the right treatment for me soon. I also am extremely sensitive to light, the glare is painful.

My fatigue has been intense and what really prompted me to think something was really wrong instead of just hard work. My muscles, especially back and arms, prickle and burn with spreading, sometimes shooting pain. I have had days where I needed to stay home from work and just cry in bed because every joint was painful. I've always had sulfite-triggered migraines, but these headaches are different, and leave me feeling dopey afterwards like a migraine. I was starting to feel kind of crazy from a combination fatigue and pain, not knowing what was going on. Depression  I have had for years , but I could tell even the depression felt a little different - that it resulted from pain and feeling so alone and isolated. In my family I have the reputation as the lazy one (I'm the youngest so I am always picked on by my four siblings!), so in the weeks before my diagnosis it felt like they did not believe me or felt this was part of my 'laziness.' It really helps knowing how common this is, so I'm grateful this forum is here. I've never felt the  need to be a 'joiner' or share problems in public but this condition has me floored, so I am happy to reach out to others who feel the same way. Looking forward to getting to know this community.

In the process of discovery I am amazed at my animals - I have four, two dogs and two cats. They know exactly when I feel bad, and have started treating me differently, gently, when I do. They seem to know which joints hurt as if they can see the pain. I've read a bunch of the threads but can't remember if anyone else has sensitive animals?

Annie

Hi Annie and welcome to the family. I have a relative that lives in Fairbanks. Really don't think I could live up there. Does the dark winters get to you???

 

I have been going to my GP for about 15 yrs so I do believe when they know you that long and have seen you healthy and happy they take you serious when you go dragging to them with horrible fatigue and pain. I did go through all the testing cause mine at the time was more fatigue and it took a full blown flare before it all clicked into place for my doc.

 

I'm glad the forum helped you get a dx. I have learned so much about fibro on here. You figure we all have one or two docs and we are getting the feedback from all those docs some good and some bad. Plus we have people on here with medical backgrounds themselves that keep up to date on all the research going on. We all probably know more about fibro than most docs cause we live it everyday.

 

My hands are my biggest problem right now, feel like they have been smashed between two bricks. I use lidoderm patches on them. They are 4x6 patches with lidoderm on them and you stick them on the skin and it helps the pain as long as it is close to the surface, haven't had much luck using them for deep pain. I cut them into and use half on each hand, it's 12 hrs on and 12 hrs off. You need an rx so you might want to consider that for your hands.

 

Can't live without our pets. I have a 7 mo old bichon that can be trying at times at this age but I wouldn't trade her. I'm looking for a little sister for her. She makes me get up and go even when I don't think I have the energy to move.

 

luv and hugs

Marlee

Hi all, thanks so much for the warm welcome. Yes, the short daylight in winter really gets to me up here, but I love the opposite in summer. I would love to move to a warm climate though.

I think the forum is really well organized so beginners can read the newbie info at their leisure and feel comfortable and safe when posting. I just got off the phone with my doctor and we are going to start my meds tonight! Flexeril and gabapentin, I believe was the drug, at night while we wait for the next rheumatologist appt. I finally am starting to feel like I'm climbing out of the basement into the daylight.