Fibromyalgia.
That does not positively rule out other additional things, BUT it does look like a good possibility at this point that all of my symptoms have been because of the fibromyalgia. To be perfectly honest, there is still a part of me that is scared to believe it because the diagnosis just came so easily at this appointment-- and after waiting YEARS for someone to tell me what is going on, it just seemed so easy for this rheumatologist. But, he was the only one to actually DO the proper examinations... I'm still pretty angry about wasting all this time and money on being passed from dr. to dr.
Anyway... to back up a bit... the neuro. referred me to this rheumatologist-- for a 2nd opinion-- in contrast to the rheumatologist I saw from LAST June. My appt. was Tuesday morning. I honestly had my doubts going in-- I guess because of the experience I had from my last trip to the rheumatologist. The last one was at a very prominent hospital affiliation (not that this one this week was not-- but the first was at the University hospital), and totally should have been the one to help me, but she was the one who passed me off to the immunologist-- who happened to be her husband. What is super ironic in all of that is that the head dr. in that office is one of the leading rheumatologists in fibromyalgia-- and SHE was actually the dr. that I was supposed to see, but not the one they gave me. I know there is a reason in all of that, but standing on the other side of the matter, I am pretty angry about all of that. Anyway... THIS rheumatologist (that I saw Tues. morning), actually listened to everything I have had going on and then did a thorough examination. I didn't know what he was doing at the time, but when he came back to explain (after I changed out of my gown), I understood that he had done the pressure points test. No one has ever done that with me-- it kills me. The last rheumatologist looked at my wrists, ankles and knees; checked my reflexes, did bloodwork and sent me on my way. If you go to that link up there, (pressure points), you will see there are 18-- to be diagnosed with fibromyalgia, you have to have 11 of the 18-- I had all 18.
I also have a low T3 thyroid count; a vitamin D deficiency; neuroma; Raynaud's; an immune deficiency and tarsal tunnel-- along with the twitching, vision issues and nerve pains... and the recurrent yeast infections and bowel issues-- apparently, all of that is caused from having fibromyalgia. Now... what are we doing about it? The medication part, I am not overly thrilled about.
The rheumatologist wants me to stay with the tripled dose of neurontin (which kicks my butt-- makes me feel drunk). He wants me to continue taking it and then if after a while I still don't see a difference (it is making NO difference at this point with my twitches or joint and muscle pain / fatigue), then I can see my GP and he will change me to Lyrica. I really didn't want to stay on the neurontin, but apparently, Lyrica has the same side effects (PLUS weight gain--yikes), so I am going to try. I am also going to take the thyroid boosting stuff that the integrative dr. gave me and then continue on the vitamin D. The dr. also suggested that I start a light exercise program, such as pilates, yoga, cycling, etc. I looked into yoga and can't find anything offered at the time I could make it in my area-- still looking and went to the library last night and picked up some books while the kids were at VBS-- just to give it a try. The dr. also said that the first thing I should do is educate myself on fibromyalgia, but not to read everything I find on the internet-- he said there is a lot of garbage out there. So, I went to the sites he suggested and also checked out some books on fibromyalgia at the library last night.
I don't want to go overboard, or I know I will be flat on my butt, but I also know that I need to get all these things going while it is summer and I have time. I also know that I can't stand this twitching anymore, so I'm giving it all a try-- in moderation. I just don't want to waste anymore time-- it's been years and just having a direction to go to combat this is a HUGE thing for me. I sooooooo want to feel 35!
So-- all this long post to explain all that, and to say that all of us should take charge of our health. Don't give up if you're being passed from dr. to dr. because all they do is try to treat the symptoms rather than the root cause... eventually, there might be someone who is willing to connect the dots and I have hope now that this has happened for me.
And, maybe now, I can post about things non-health related. :)
Lynn
15 years ago
1 comments:
hi there.
it's anonymous again...only because i haven't taken the time to create a google account. let's add impatient and procrastinator to perfectionist;)
as i was reading some of your health posts, i couldn't help but wonder if you have explored food allergies.
maybe it isn't an issue, but if you haven't gone down that path yet, it is very worth exploring.
i come from a family that thinks that kind of thing is silly...only REAL sicknesses count;) i must say that i had the same mentality until i was forced to eliminate food groups from my diet...and i my body felt so much better. i always had intestinal pains here and there throughout the day, but i was used to that. i was starting to feel pain (increasingly) in my joints, but i figured maybe that's what happens as you get older (i'm 37). my head was often foggy...seasonal allergies i thought. constant sinus congestion...again, seasonal (every season i guess) allergies. oh, and i was tired all the time...i just felt bad.
well, i eliminated many things from my diet, and immediately, my intestines thanked me. the other issues slowly subsided, and i experienced a mysterious rash on my hands as the culprit substances were leaving my system...classic "your body doesn't like this substance" sign...during the detox period.
i am pretty sure that wheat is the major culprit for me, but also suspicious of dairy. i will have a blood test done in the near future (within a month or two, when finances can handle it) to help me with the guessing game.
i share all this just in case there might be even a slight possibility of it being helpful to you. i've researched and learned of others who experienced the same type of relief.
if you research wheat and dairy allergies especially, you will find many of the same symptoms...many of the symptoms you have mentioned in your blog.
i know sometimes when people say, "maybe it's this, or sounds like that," that it's not helpful and can even be discouraging. i hope and pray that this info is not discouraging to you, but rather, helpful, and if nothing else, from it you will know that someone (me) wants you to find some answers and some relief.
although i have eliminated some of my phys. issues by eliminating specific food groups, i still am dealing with ocular and facial rosacea...it has improved, but still is there, and quite frankly is a real pain. along with eliminating food groups, i also have to find out what foods specific to me...aggravate the rosacea. it's not the same for everyone, so very frustrating. i have to eat differently from my fam, can't enjoy dinners or special treats out with them...b/c there's always wheat or something else that i cannot have.
rosacea causes facial flushing and rashes, as well as eye problems--styes, ulcer-type lesions inside eyelids, and could eventually cause blindness.
drs. often want to treat the condition with long-term antibiotics to keep the inflammation down, but i'm not willing to go that route yet. it is a vascular problem mostly, so i am also taking supplements for that.
i am praying for healing. it's not a condition that goes away, but one that you learn how to manage. it is also progressive, so in my mind, i see myself facially disfigured in 10 years (joking...with just a hint of real fear;)
so i pray, and remember that God knows what i need. my face is his face. i will continue to ask for healing...i know he will give it if it is good for me. i continue to ask for peace, and i know he will give it. i need to remember what my priorities are in life...seek first his kingdom...and all these things will be added...
I am so glad that I am not handling this alone. God is in control. I so often feel that it is out of control, but the truth is that it is under His control...and i need to rely on His ability more than my own.
And here we are back at the control issue...this is where i am...relinquishing and finding peace, but soon to begin fretting and almost obsessing, and the cycle continues.
let's keep praying for one another.
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