update: Long

[Crankin]

I am not sure if this is a final update on my weird medical issues. Things have not really been better, but yesterday i went to see my rheumatologist, after seeing a rheumatologist at one of the Harvard affiliated teaching hospitals in Boston. They have decided that I have fibromyalagia. While, I am glad I have 2 doctors that agree on something, I still am not completely satisfied that this is what I have. Am I just obsessing on things? I am still having ringing in my ear, every 2-3 days, which can be a symptom, but it's not a common one and sometimes I feel like my hands and feet are turning red, like maybe I have some type of circulation issue. I am also having weird pain near my glands in my throat that no one seems to say anything about. Anyway, I have some questions for those of you who know about these things.
The doc gave me a prescription for Lyrica, which has just been approved to treat Fibrom. The side effects look very scary to me (dizziness, tiredness, hand swelling, weight gain ). He told me to consult with the shrink that has been prescribing anti-anxiety meds in tandem with the therapist I am working with (who is not an MD). I have an appt. to see her tomorrow, so i will discuss this. He also told me to gain 5 pounds! I have lost a couple of pounds, but I really don't want to start pigging out. I eat healthy and I don't starve myself, but all of these issues have decreased my appetite at times. So, has anyone here taken Lyrica?
Question 2 has to do with exercise. The doc and everything I read says exercise helps this condition, but strenuous exercise makes it worse. This does sort of go along with what I've experienced. When I ride with my friend who has an average of let's say 13, I am fine. When i ride by myself or with others that are fast, my symptoms get worse after i ride.Usually my average is around 15-16 on roads that have some climbs, but not continuous hard climbs. I hate to go backwards in what I have accomplished! But it does seem like my trip to the Berkshires where i did 9,000 feet of strenuous climbing in 3 days sort of pushed me over the edge last summer.
Finally, I have an appointment in Boston for a 2nd opinion with a neurologist in 2 weeks. I am going to keep it, because I still am not sure I agree with this diagnosis. Also, my ENT told me that he can hook me up with someone in the top diagnostic internal medicine group at the same teaching hospital in Boston, if the neuro doesn't find anything else. He is the only one who doesn't think I am "crazy."
I feel a little better mentally, but I am totally frustrated by the fact that maybe I am just someone who is totally afraid of illness and dying and this is how it comes out. I had about a year of this when I was in college, although the physical symptoms were somewhat different. I have had to hold it together this past week; my former exchange student and his girlfriend are visiting for 2 weeks and my son who is in the Marines was home for a few days. (ramble here) He is definitely going to Iraq in March, although as an intelligence officer, not as a "fighter." It's still dangerous, but at least he won't be riding around in a Humvee with his head sticking out of the top as a gunner.
I am supposed to be going back to work during the last week in February until the end of the school year, to fill in for a former colleague who will be on maternity leave. I really want to do this, but some days I wonder if I can. I seem to be worse in the mornings. It's pretty much too late to tell my boss "no," so I am going to try. We also have a x country ski trip planned at the end of January that I am nervous about. I guess i can go and not ski, but I just can't cancel another vacation because of this. My husband has had a hard time dealing with the stress of all of this and he really needs to get away and I feel like I do, too.
Last queston: Anyone know anything about accupuncture as a treatment for Fibro.?

Thank you everyone!

Robyn

[DebW]

Robyn, glad to hear that you have somewhat of an answer, and have found doctors who don't think you're crazy. Hang in there. Wishing you improvement and peace of mind.

[Tuckervill]

You can just say "no" to going back to work if you don't feel up to it. They've got until February to find someone, no? If overdoing it makes your condition worse, and going to work will cause you to overdo, you might end up being unable to finish the job anyway and then where would it leave the school? Of course, only you can tell what the right thing to do is. But don't rule out a polite reordering of your needs if that's what is required.

I think this is a place where your commitment to your health trumps your loyalty to your employer. They'll cope.

I keep thinking they're going to find a virus for fibro, and chronic fatigue syndrome. Wish they'd hurry up!

I'm glad you're seeing medical folks who seem to know what they're doing. I hope there is a speedy relief for your symptoms.

Karen

[salsabike]

I have had fibromyalgia for a long time. I can try to answer some of your questions.

I don't know anything in particular about Lyrica, but would just want to mention that they have to list all reported side effects--doesn't mean everyone or even most people get them. I know you know that but it's nice to remind yourself after you read those scary side effect lists.

Some of the odder places where I have fibromyalgia-related pain at times---throat cartilage, ear cartilage.

You didn't really ask a question about the exercise thing, but moderate is better than extreme, although it doesn't mean you can't slowly work back up to where you were. It just means you should avoid exhausting yourself. I had to quit ballet after I developed fibromyalgia because ballet clearly set off major muscle pain spirals that went on for many months. But I can ride a bike 100 miles and a tandem 200 miles in a day. Best bet is to slowly work out over time what you can do and what seems to make you feel worse.

It doesn't sound like the rheumatologists think you're crazy, either.

I found acupuncture helpful for several days after a treatment for severe muscle pain, but no more than that.

I never became really disabled from fibromyalgia--that is, never had to stop working or being active, never came close to being bedridden by it. But I have heard about other people this did happen to. So I would try very hard not to go in that direction. If full time work is too much, perhaps part time would work--but not working at all may make you feel pretty bad. I would try to stay active and engaged and having fun, listening to your body so you know when it's time to take a break.

[KnottedYet]

Is it at all possible you have celiac disease?

Most often it's a gut issue, but it has neuro and pain varieties. (I get ringing in my ears, dizzyness, tingly hand and foot, odd pains, and used to get rashy-stuff on my hands and feet; along with a host of gut problems. I feel like a damm hypochondriac half the time!)

Celiac messes with the body's serotonin levels and knocks the serotonin transport molecules out of commission. Leads to depression and other serotonin related problems (OCD, panic attacks, etc) and nerves that over-react to stimuli. Oddly enough, the use-able serotonin improves in celaickers who are chronic smokers, the nicotine helps.)

Since celiackers can't absorb nutrients properly they can have wide range of nutrition issues. Vitamin B12 is a biggie (thats a vit that's very important for the nerves and very hard to absorb. Even taking 160x the daily amount, my blood level is just barely normal.)

Celiac can be quiet most of the time and just blow up suddenly from stress, too. Mine defintely gets crazy sometimes and has been non-existant other times.

My old doc was convinced I had MS for 2 years, until I finally went to a couple neurologists and they both thought I was dealing with celiac related stuff.

It might be worth looking into. (mind you, take all this with a grain of salt. but if you're curious it might be worth a half hour on google)

[Crankin]

Thank you, Salsa and Knott. To Knott, I was tested for celiac and i do not have it. I had a pretty extensive GI work up, along with a scheduled colonoscopy in October. All I know is that when the ringing and other pains get worse, the stomach gets worse, too. But, my rheum. told me that GI issues are part of this. Do PTs ever work with Fibro pts.?

Salsa, hearing that you can ride 100 miles gives me encouragement. There is still a part of me that is questioning the diagnosis, mostly because most of my symptoms are on one side of my body. I'm getting headaches now, too at times, along with the ear thing. I started getting these headaches about once or twice a year about 14 years ago. I know this can be part of the Fibro. diagnosis, but this is the thing that bothers me the most. My muscle pain is there, but certainly not the worst thing I have. Yesterday i woke up feeling OK and went to spin class. I knew I would pay for it; by night my hands were tingling and my back hurt. The ringing is there today, but it's minimal. I guess I am having real difficulty giving up the "athlete" part of me. It's been how I have defined myself for so long. I mean, I am not a super star rider, but I've been involved with fitness since the early eighties. This time of year, it's easy for me to tone down and just walk, do some cardio machines at the gym, and yoga, but i don't want to be completely out of condition for the spring. I usually start riding outdoors on a part time basis in March and that doesn't seem so far away.
As far as the working goes, I am going in to school to observe the team I will be working with, next Thursday. I am going to try to do only very low level exercise before that, so I feel good that day. At this point, it would be very easy for me to become one of those people who just stays in the house. My therapist and everyone else are telling me that working wil be the best thing for me. It's only a 3 and half month committment and I can pretty much be on auto pilot, since it's exactly what i did for the last 10 years. After that, I am thinking of going back to school for a second master's in clinical mental health counseling, emphasizing holistic psychology. I wouldn't be starting until Jan. 09 and of course, I have to get accepted into the program! But, even though it will take 3 years to complete, it will set me up for a career i can do on a part time basis.
I've tried 2 anti depressants and both made me sicker, with lots of side effects. I am done trying that. I am still taking the anti-anxiety drug, but am weaning down the dosage. I have my appt. with the neuro. at Brigham and Women's Friday. After that, I guess I am done with doctors if he concurs with the diagnosis.
Salsa, i will PM you.

Robyn