Status
Not open for further replies.

MamaGeek

New member
Joined
Mar 7, 2016
Messages
7
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
Not revealed
Hi, my name is Joy. I am new to these forums, and this is my first post. I am 37 years old.

I have been struggling for a long time, getting diagnosed with various things.

1. I had GERD (acid reflux), and my gastroenterologist told me it was the cause of my IBS, even though IBS started years before GERD, and continued even after my Nissen Fundoplication surgery corrected GERD. Now I think fibro is the culprit.

2. I had my first migraine at 22, and was officially diagnosed at 33. But I told my Neurologist I get tension headaches every day, but he didn't seem to care about that, only about migraine. He discounted it as "everyone gets tension headaches."

3. My knees are valgus aligned (bend in too much), which runs in the family. I do physical therapy every day, which the orthopaedist said would prevent any damage, but I still have pain. I thought it was my fault for not doing my exercises right, or not often enough, or maybe they were just worse than I thought. I was worried that the cartilage was getting damaged, despite the orthopaedist's assurances.

4. I have had chronic pain for years. Knees, HIPS, lower back, upper back, NECK, jaw, face, TEMPLES. There did not seem to be any cause, any reason. With all my other problems I didn't want to be a hypochondriac, or a complainer. I thought this is just what happens as you get older.

5. My mom has fibromyalgia, but the way she described it was "hard knots" in her muscles and severe pain. My pain usually is not severe, just very widespread and persistent. She did not tell me about fatigue or anything else. I'm not sure that she really reads about it to understand and be able to explain it to me. So, I never connected the dots. I never considered (until very recently) that I might have fibro, too.

6. Not since I was a teenager have I been able to spend hours in the sun. I remember going to the beach with my friends in high school, staying out all day. Now a single hour leaves me exhausted. Cold gets me, too, but the sun is the worst. Bright lights and strong smells are painful, too.

7. I was diagnosed last year with Upper Airway Resistance Syndrome, a sleep disorder characterized by numerous arousals into a lighter sleep stage all through the night, so that I don't get good deep-wave sleep. I recently read that fibro can cause that very thing. I have CPAP therapy now. It is TREMENDOUSLY helpful. I no longer get sleepy during the day. I get fatigued, but not sleepy.

8. I am very familiar with "brain fog", since I always have that the day after a migraine. I call it a "migraine hangover". Then I started having it on other days...

Last 3 weeks:

Three weeks ago I experienced a day of high personal stress, followed immediately by menstruation. This triggered what I now believe was a major fibro flair. I had a high level of pain, fatigue, and brain fog for 2 days, followed by a severe migraine. I missed two days of work. The following week and a half I forced myself to go back to work, but it was a struggle just to get out of bed. By the time I got home, I was so exhausted I didn't want to do anything. I canceled all social engagements, and limited myself to the bare minimum. I felt so guilty when my kids asked me to play with them, or my husband asked me to watch tv, but all I wanted to do was go to bed.

Normally, I use the weekends to get things done. I clean the house, do other chores, run errands. The last two weekends, I sat around and read a book all day.

idea.gif

I finally had a lightbulb moment when I searched fatigue+headache on WebMD, saw fibromyalgia listed as a possible cause, and remembered that my mom has it. I started reading about it, and all the pieces started to fall into place. "That's me! That's exactly how I feel!"

I saw my primary care physician last week. She tested me for anemia and thyroid disorder, but both came back normal. She referred my to a rheumatologist. There is only one in my area accepting new patients, and he can't take my insurance yet, but is in the process of filing the paperwork. They told me it would be 1-4 weeks, then they will call me to make an appointment.

So, no official diagnosis yet, but boy, am I sure.

Now, I always do my homework. And I'm very wiling to try alternative therapies. When I had GERD, I went on a super-strict low-fat, low-acid diet. It wasn't enough (hence the surgery), but it definitely helped. Now, I have not read that there is any diet that helps fibro, other than just general healthy eating, which I already do, but the point is, I'm willing to make lifestyle changes.

Based on what I read, this is what I'm hoping to get from an official diagnosis:

1. Understanding from my family
I get the strong impression from some family members that they think I'm lazy or a complainer. I'm hoping that knowing I have a real problem will make them a little more understanding. Has any of you had that experience?

2. Trigger awareness and avoidance
I have already started journaling symptoms and a whole host of potential triggers. I did this for migraine, and was able to reduce their frequency from once a month to once every 3-6 months. Am I being too optimistic? Can trigger awareness and avoidance make that big of a difference?

3. Alternative Therapies
Do rheumatologists refer patients for chiropractic treatment or massage? Pain mangement specialist? Is it helpful? I am starting to read the forums about other therapies. I'm willing to try different things.

4. Drug treatment
I would rather avoid drugs if I can, but am willing to try whatever helps.

Thanks for reading my long rambling post! I am glad I found these forums, and I thank you for your support.

Thanks,
Joy
 
Hey Joy,

I'm new to all of this, as well, but I wish you all the luck in your diagnosis and treatment.
 
Hi joy. Welcome. I'm so sorry to hear how hard your having it. Your story certainly sounds familiar. Unfortunately the road to a fibromyalgia diagnosis can be a long one. It usually involves ruling out everything else, a doctor that is familiar (usually a ruematolgist) and positive trigger points. There is a new test out that is thus far a little controversial and exspensive, my insurance does not cover it. Self help is vital to fibro suffers, but as it progresses it often isn't enough.
I hope this info helps a little. Don't stress yourself out. Try searching out a ruemotologist that specializes in fibro/CFS an official diagnosed could relieve a little stress and send you in the right direction
 
It sounds you are on the right path! Journaling symptoms is a great idea! Just make sure to get checked by a good neurologist as well, it's better t be safe than to be sorry later. Make sure to find a good rheumatologist as well, I know is not easy, but it's well worth the effort, try to find one that actually believes or knows about fibro. Don't be afraid to be pushy and ask for tests, it's your health... you need to be diligent and assertive with this. Best of luck with everything, and please keep us posted!
 
Status
Not open for further replies.
Back
Top