I was diagnosed with FM a few months ago. The pain has gotten much more severe the last couple of days. I have thought about calling my rheumy, but it just seems hopeless. I am also seeing an Endo and a Cardiologist, and between all three, it is wearing me out. I feel like he will want me to come in, which seems overwhelming to have something else I have to do, and is there really anything he can do to help? I am taking Neurontin 600 MG, and the fatigue which has been my major problem has recently gotten better. Actually, I think having energy again made me feel like doing more and now I'm paying for it with the pain. I would just assume go into the hospital a few days for all the dr's to get everything straight if I could instead of running to all of the appointments. Or, forget the appointments, and take a week or two off work to do nothing. Please let me know what has helped you to get past a flare. I don't have anyone to talk to because my family would just worry if they knew. Besides, I don't know how to explain what FM does to people b/c I'm still trying to figure it out myself. Thanks for listening and for any advice.
Hi Ducky, don't give up. The appointments are tiring & hopefully they doctors are working together to get you into more of a "stablized" condition that doesn't require so many appointments.
Besides the Neurontin 600mg what other medications do they have you on? And what are your main symptoms that you are having or is it just the pain that is the worst? Are you having any migraines/dizziness/vertigo/pain numbness in feet or hands? Why did your other doctors feel that you should see the Neuro Dr?
The symptoms listed above are some of the main ones that the neurologist could possible help with. The reason's I've seen my nuerologist were due to Lupus and it included vertigo, peripheral nueropathy, migraines etc. I haven't seen them for Fibro exclusively. (But, often symptoms do overlap).
Getting well & managing the pain is always a fine balance.
Hugs to you & I'm sure others will post with helpful suggestions as well.
Ducky you are right in your thinking that we do more when we feel better and then we have more pain. The trick is to not overdo on the days you feel good, but try to keep an even balance of things you try to get done every day. Does that make sense? In other words I try to do X number (whatever you can stand) of hours of work each day. No matter what there is to do or how many project I need to get done. I can usually get three maybe four hours of work done each day. These are not consecutive hours, I try to rest if I need it. Of course there is daily living everyday and I weave that in between it is just a matter of keeping an even pace and not overdoing when we feel good. Of course when I have bad flares, I do only what is absolutely necessary!
I know the doctor business is a big hassel, but as soon as you find out what medications and exercises and routine helps you the docs visits will slow down. You will know what is best for you and what will help you through the flares. Hang in there.
Thanks, today is better - back to the "normal" amount of pain. I guess I just need to learn my limits. Before, that wasn't an issue as much b/c the fatigue kept me slowed down. I worry about the upcoming months though b/c things are getting busier - school started back last week for my sons as well as their sports. I want to be an active mom, but I wonder how I can keep up.
The other meds are Synthroid 75 mcg and Cytomel 25 mcg for Hashi's/hypothyroid (I believe adding the Cytomel a few weeks ago is what made the fatigue better), Avalide 300 mg and Atenolol for high bp, and iron for anemia. My symptoms started in Feb with chest pain and heart racing, went to the ER and had abnormal EKG. This is when I found out about the thyroid problem. I was referred to a Cardiologist as well, and that checked out fine. I was referred to the Endocrinologist for the Hashi's. He referred me to a Rheumatologist due to a butterfly rash and extreme fatigue to check for Lupus - the ANA was negative, and he diagnosed Fibro. The Endo also referred me to an Oncologist to rule out Lymphoma b/c of enlarged lymph nodes in neck - they are still there after 6 mos plus the anemia has not improved, so he is planning a bone marrow test. I also took a lot of antibiotics for possible infection, but this didn't make the lymph nodes go away either. Overall, my symptoms have been fatigue and pain - mostly in hands (feels like arthritis) and feet (feels like being stabbed), and overall general flu-like aching. I have experienced dizziness and vertigo, but that has gone away. Oh yeah, another big symptom is confusion and brain fog. Does all of this signal something we could be missing? Hopefully, the Oncologist will rule out Lymphoma soon and I'll be down to 2 docs!
Thank you for the support!! I read the poem about the spoons listed in another post, and that really helps to explain how we need to limit ourselves.
Are the docs who are prescribing the diuretic, beta blocker, & thyroid meds in communication? Everybody knows what all is on your med list?
Atenolol blocks action of thyroid hormone at the cellular level. Avalide is a chlorothiazide, containing 2 chemical groups that interact w/thyroid. Not sure if there are better bp meds for you.
It does occur to me that it's possible your thyroid meds may benefit from further tweaking in light of what they're up against (the bp meds are sort of fighting the T meds). Perhaps this has already been discussed with your docs.
Unfortunately, to the best of my knowledge, there is no common test for thyroid hormone uptake at the cellular level. So it's possible to have *perfect* free T3s, and to still have a problem. The role of thyroid hormone deficits in fibro is becoming clearer.
I would also get a recent thyroid antibody panel, the whole she-bang, not just the Hashi's antibodies. Sometimes people have Hashi flares and/or develop Graves antibodies in addition to the Hashi antibodies. This can make for a nasty situation where hypoT symptoms can co-exist alongside hyperT symptoms, or fluctuating from one to the other.
Do make sure you don't overdo with your new-found energy.
Thanks Elmhar, this is very helpful. My doctors know of all of my meds, but the interactions have never been mentioned. A change could definitely improve my symptoms based on the way you explained it. I'm scheduled for bloodwork next week, so I'll request the who she-bang! Thank you, thank you, thank you for the advice!!