Sounds like you are having a hard time. I just wanted to say that Most of your symptoms that you listed at the begining of your post are symptoms that I have, and I have been diagnosed with Fybromylgia and just recently had an MRI of my Brian and the report reads Chiari Malformation, Chiari can cause alot of the same symptoms that Fibro causes. Have you had a brain MRI? If not it might be worth asking your doctor for one.
I also have had a positive ana blood test, but all the other tests for RA, Lupus, etc. have all came back neg, so I know how you feel, it can be frustrating not knowing the exact cause of your symptoms.
I wish I could be of more help.
Thank you for your response!
As an update: I have continued to experience the above symptoms on and off. I did have a UTI (I get them a lot!) back in Dec around the time of my post that was treated with antibiotics. Also, had high blood pressure 135 over 100 at the same time and slightly abnormal EKG at that time, but have done testing since then and heart is ok except for tachycardia, which I have had since my Graves, despite treatment. Dr. feels that blood pressure was a response to pain/stress and that it caused the abnormal EKG (stress test was normal). Rheum labs continue to be normal except for the slightly elevated RH factor (15). Thyroid TSH was a little low now (4.2) but still within normal limits (it fluctuates constantly!). They did find elevated thyroid peroxidase antibody (96) and then most recently (54), so there is still some thyroid antibody stuff going on. I wont see endo for another month.
Neurology seems to think I am having migraines, pending the MRI, and prescribed noranatriptolyne, which makes me way too tired. I am scheduled for an MRI on Feb 7. The migraine thing doesnt sound right to me since sometimes I will have these symptoms for weeks--week-long migraines? Rhuem says I may have Reynolds syndrome causing the pain in hands/feet and the cold feelings. Gave me med basically blood pressure meds, which helped the cold in my hands and feet and some of the pain, but still achy. Seems every specialist has their own opinion about what's going on!
I also get terrible pelvic/abdominal cramping much worse around menstrual cycles, but not only at that time. Have been told as a teen I had IBS but never had tests run other than that. Going to GYN to see if they can find something, but if not, may need to speak to GI dr.
The only new nerve-like symptoms I have been having is a sort of numbness/buzzing feeling on my lips and sometimes tongue. But it is only occasional.
I actually had a neg ANA, which is surprising to me, given the thyroid antibodies and RH factor. Do they know what is causing the Chiari malformation and are they going to change your diagnosis from fibromyagia? Which dr. gave you the fibromyalgia diagnosis?
The chiari is something that you are born with, I think it can be caused by trauma also but I am not for sure.
I have not had any change in my diagnosis, and my Rheum is the one that diag the fibro, actually two different Rheum both diag me with the Fibro.
I am going to have some more tests done next week, I will update after I find out the results.
It sounds like you have multiple issues going on, so that makes things just a tad bit more complicated.
Some questions for you:
~ do you wake up feeling refreshed ?
~ if you push yourself one day, are you ill and/or in bed the following day ?
~ are you frequently thirsty ?
I haven't finished reading your posts but my goodness you are just falling apart! So was your thyroid completely removed then? There are something things you will need to supplement but I can guarantee you will be feeling 100% better in a week if you do.
If your thyroid was removed you should be on a dessicated thyroid supplement as well as:
High iodine supplement (12.5mg daily)
Selenium (200-400 mcg)
A really good Multi (you can find a great one at TheIodineProject.com)
Licorice root, panax ginseng, or siberian ginseng for your adrenals with is the cause of the insensitivity to light.
Cod liver oil
additional chromium and vanadium
You can find more info about all this as well as my story at TheIodineProject.com .
Funny... all of the supplements that you listed (except I took fish oils), I have taken for CFS. ; ^ )
That is funny... And wonderful too that you knew to take it, has it helped you as much as it has helped me and my mother?
Yes... and these supplements are often recommended by the fibro/CFS experts. I also take ACTYL Carnitine & COQ10. I used to take a supplement (actually.. it's a sugar) called "D-Ribose". It has been proven to be helpful for many fibro/CFS patients. It worked for approximately 6 months.. gave me extra energy and then for some reason, it stopped working for me.
Lol, that's so funny about the D-ribose, that is the first thing I told my friend about to help her with her Fibromyalgia! After that I started searching all natural things and found out about Iodine and how important that was and then also about the importance of the other supplements listed. I have also found that COQ10 is great for Fibro people, havent found out entirely why, but I know it is...
I'm glad to hear that. I am one of the Community Leaders in the fibro/CFS forum and I see many fibro patients on drugs such as Lyrica and it seems like 99% of them are not getting better. In fact, we recently had a poll in the forum and none of these people were seeing any improvements. I can't tell these people what to do, but I often suggest to them that they should consider listening to the fibro/CFS experts. Many of these experts recommend supplements such as magnesium & D-ribose.
Thyroid peroxidase antibodies are implicated in both Grave's disease and Hashimoto's Thryoiditis and they can co-exist and cause most if not all of your symptoms. Does ablation mean you had all of your thyroid destroyed? If not, then if there is any part of your thyroid still functioning then that could be the problem. There are also related diseases and conditions caused by the pituitary and anterior pituitary as well as adrenal glands that can cause those problems. The adrenal glands are involved with PCOS as well. Vitamin D is the only vitamin that acts like a hormone inside the body and is involved with hormonal function. So if you have something wrong with your adrenals/pituitary or thyroid it can affect your Vitamin D. You might ask your doctor to take labs of your growth hormone, DHEA, ACTH, cortisol levels as well as test your ferritin levels since you can have iron deficiency anemia with low levels of ferritin while your hematocrit and hemoglobin appear to be normal. I had low ferritin a few months back and it caused serious brain fog, fatigue aches and pain and I was never colder in my life. If you are having to wear sweats to bed and pile blankets on top of that and you are still cold, my guess is you are anemic, but if they do not test your ferritin along with the hematocrit and hemoglobin they may miss it. Two doctors missed it in me. The third doctor did not. He put me on an iron pill called chromagen forte and it made a huge difference within two weeks.
The radioactive ablation I had did not destroy all the thyroid cells. I still have some living cells apparently. I have not had my cortisol, ACTH, or growth hormone levels checked. Hopefully endocronology will do that this month. DHEA was ok this time. As far as I know, I do not think anyone has checked my ferritin levels. I will ask my dr about that on Fri. I did not know that the other levels could be ok, but ferritin not be. My MRI is at the end of this week.
I have been on some of these supplements before, but not lately. It is difficult for me to tell what is working/not working lately. I did try the Maxalt for the 'migraine' headaches and saw no improvement. I think neuro looked at me, at my age, and my thyroid problems and heard that my father gets migraines and sort of lumped it all together.
I have been feeling terrible lately, hope drs figure it out sometime soon, though I must admit I'm jaded about that. When I first got Graves it took them a year to figure it out (blamed it on puberty, being female, the its all in my head treatment, you know how it goes) and even when I had my relapse years later, took me about that long to convince someone there was something wrong with me enough to even draw the right labs, even tho both times my symptoms (and disease activity) were severe! This seems to happen to me a lot, especially if my particular history and symptoms don't follow the expected textbook trajectory. *sigh*
An odd new thing that has been happening this month is periodic breakouts of mouth sores. They don't really hurt. I have one now. A coupple weeks ago I had three at one time. I have had what I call 'canker sores' throughout my life, but these new bumps/swellings are not really painful.
GYN scheduled an ultrasound at the end of the month to check for anything out of the ordinary that could be causing the pain. I know 1 in 4 women get endometriosis, and my aunt had it so bad, she had a hysterectomy, so I suppose it could be something like that, but I think they have to do a laparoscopy to check. Probably not related to my other problems?
If fribromyalgia is the cause, I am not sure who would dx it, but will keep an open mind about that possibility.