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

[KnottedYet]

Glad you got the celiac possibility out of the way!

All my odd symptoms are on one side of my body, too. Even the bald patches I get on my tongue after I encounter gluten or during a celiac swing, they are only on the one side. It's a pain, cuz when I'm having a bad spell I'm always dropping things out of that hand or colliding with doorways on that side, or tripping over that foot. (or feeling like bugs are crawling on me on that side... ewww!)

Yes, PT's do work with fibro patients. I used to work in a clinic that had a fibro program designed by one of the rheumatologists at the hospital. It was pretty good, we had some neat results. You could probably find a fibro PT program or PT clinic with a specialty through your doc. Or just start calling clinics and asking.

[salsabike]

Yup, the forced reevaluation of physical activity is hard. Ballet for me wasn't just something I did, it was part of who I was. When I got fibromyalgia, I was taking 12 ballet classes a week and in the best shape of my life. It took me a long time to find something else. Because fibromyalgia behaves differently in each person, there's no easy way to sort through it. The twisting of body parts and the hard pushing of one set of muscles against another set that is part of ballet created major muscle pain for me that spiraled out of control and stayed there. I did try going back to class several times when I felt better, and each time, it re-started the pain, so I learned I could not do that anymore. It was pretty hard for me to give up and I was very angry about it for a long time. You would think that cycling might not work because of the upper-middle back and arm use, but it has, as long as I am careful not to place too much weight on my arms for a very long period of time--so bike fit is important for me.

I guess I am saying: DON'T give up the athlete part of you. Just know it'll take some aggressive analysis on your part to figure out how being an athlete can be reconfigured for you so that you can still do it well and not have it make you feel sick.

And, by the way, my fibromyalgia started with constant headaches and weird visual symptoms. It's a REALLY annoying syndrome.

I think many of these are probably related underneath--fibromyalgia, celiac, rheumatoid arthritis, other autoimmune-type reactions.

[margo49]

What DebW said.
Thinking of you.

[LBTC]

Robyn, I am sorry that you're going through this - it sucks to be less than well and trying to redefine oneself. I've had my own issues over the last year and have had to look hard at my expectations of myself in every aspect, especially exercise. You will find a way to be your athletic self, and it will be an adjusted view - perhaps more endurance events, less about speed, longer sessions, lower intensity, you may even find another sport that really works for you. You will get through this!!

You asked about acupuncture, and you also said:

All I know is that when the ringing and other pains get worse, the stomach gets worse, too.

I have been seeing an acupuncturist trained in traditional chinese medicine. When I remember to mention the ringing in my ears, she asks a lot of questions about the quality of the ringing. Apparently the more of a hiss that I have is related to my stomach. She can also identify which organ energy is affected by looking at the patches on my tongue. And her treatments always provide a level of relief and healing. I believe this treatment has been integral in my healing process, along with integrated massage, gentle exercise, careful diet and homeopathic remedies. Whew. Yup, it seems like a lot, but it all works together so I'm no longer getting cane envy, and in fact people are commenting on how healthy I look!

I'm sending you lots of butterflies to help you through this. Feel free to PM me if you want any info on the stuff I've been doing....

Hugs and butterflies,
~T~

[Crankin]

Well, I went to the neurologist at Brigham and Woman's Hospital on Friday. He had all of my neuro. work up already and I brought the rest of the rheumo. work up with me.
He listened well and basically said that he sees this everyday and that sometimes menopause will set it off. Not sure about that, I haven't had a period in 5 years, but my hot flashes stopped just before i started with all the Fibomylagia symptoms. Anyway, he wants me to try some very old fashioned anti-depressant drugs in a low dose that will help calm down my overactive neurological system and help the headaches I've been having. He also said it might take 4-5 months to calm down. He is sending all the info. to my primary care doc and she can decide which one to try. I don't see her until 1/8, so I am continuing with the anti anxiety drug until then.
Yesterday I went snow shoeing with no ill effects. I tried to go slower than usual, though. I'm still having almost all of the symptoms but I am trying to go on. Tomorrow I am calling for a consultation with an acupuncturist.

[shootingstar]

HOpe you will find a solution to make you feel better...

Not sure what the connection between anti-depressants, menopause (when you haven't had a period for 5 yrs.) and your condition.

[RoadRaven]

Hey there Robyn
So good to hear you are gettings labels and names and reasons - so much easier to fight the dragon when you know its name.

And you went snow-shoeing! Way to go!
I have never ever been snow-shoeing and would love to, so your challenge is to get out there and shuffle (what is the term for snow-shoeing movements?) some steps for me, ok?

[Crankin]

Well, things have been up and down. I started seeing an acupuncturist, who has done 2 treatments. It seems like some of the muscle and bone issues are better, but I am still having the stomach issues, ringing/pain in my ear, etc. Then, all of a sudden, I started feeling like the glands in my lower throat were hurting and the right side of my neck hurts. I don't have a sore throat.I have been having a lot of TMJ pain all along through this saga and now it seems to have migrated to the lower jaw. I went to the doc. (the rheumatologist) who repeated the complete blood work scan (usual, sed rate, CBC, Liver function, and a few others). Everything was perfectly normal. He felt my neck but didn't seem freaked out by anything. Sometimes it hurts when I swallow, SOME of the time. Of course, now I am freaked out I have something else bad... the story of my life. Am I going crazy or should I pursue this more? I am not sure if the thing I am feeling are the thyroid nodules I already had checked out or it's in a different spot.
I have an appointment with the rheumo on the 3d. I doubt I can get in before then and my primary care doc is on vacation (I see her on the 8th).
I am still doubting the Fibromyalgia diagnosis; it's so nebulous, yet nothing else is showing up. I am trying to stay active; went x country skiing Saturday, just some stretching since then. I wanted to go snow shoeing today (nothing else for us non Christians to do!) but I am not sure if I should force it. I feel better when I am out there, but I can never get my mind off of this. I told the acupuncturist my goal is to get off of the anti anxiety meds, which I am definitely addicted to.
It seems strange that when one symptom disappears, another one comes.
Just looking for some reassurance here.
Robyn

[Triskeliongirl]

Hi Robyn. I am sorry you are still not feeling well. I honestly can't answer your questions, but maybe the folks with fibromyalgia can. I know you want this figured out today, but maybe you just need to be patient, and work with the professsionals you have consulted to try and sort this all out. It seems to me not so important to have a 'label' for it, as much as it is to find activities that make you comfortable. You mention thyroid nodules? Are you hypo or hyper thyroid? Is it being corrected? I am hypothyroid, and I had bad carpal tunnel before it was optimally corrected. I don't think you should worry you have some other terrible disease, but you should be aware that an out of whack thyroid can cause a lot o f diverse symptoms. At one point they also thought I had fibromyalgia, but that all went away when I got proper PT and on the bike correction for a leg length discrepancy. SO sometimes lots of little things can also contribute to diverse symptoms and you are probably the only one that can sort it out. I am throwing this all out, not that what casued my problems is causing yours, but the idea that sometimes it can take time to sort out multiple small things. The best is probably to focus on one problem at a time. I would start by dealing with the thyroid nodules, and be sure your thyroid is either functioning well, or get on thryoid hormone replacement therapy. It doesn't work right away either, it takes about 3 months for the body to adapt to a dosage change. Good luck, stay strong and positive, and you'll sort through this all!