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.
One other thing is that I do have a freckle (dark spot) on my left eye which may be getting bigger. I have an appt with opthamology next week, but at the appt I had back in Oct they said my eyes were ok, but to keep an eye on that spot. Others have also noticed that it appears to be growing. I will discuss this with them, but am aware that this sort of thing could be a melanoma in the eye like what people get on the skin. However, I'm not convinced this could be causing any of my symptoms, just something worth mentioning.
So sorry to hear that you are going through your ordeal. There are so many people here that have been right where you are. I know these drs are sincere and are really trying to help. The most valueable dr is one that will listen and maybe even do some of the test you request.
You could possible have several things going on.
There are even tick illnesses that can cause some of this.
I agree w/ PlatletGal that you probably have more than one thing going on.
Here is a list of things that COULD be going on:
fever, headache, chills, severe muscle pain, fatigue, nausea, vomiting, rash, cough, lymphadenopathy (?), arthralgia (?), stiff neck, erythema migrains (?), leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia
Rocky Mountain Spotted Fever is another possiblity:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.
(I ended up testing possitive to RMSF) I was a very sick puppy last year. Fibro, lupus and RMSF
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, depression, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness or tingling in extremities, fainting spells, light headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.
muscle pain, morning stiffness, insomnia, musculoskeletal pain, joint pain w/o swelling, fatigue, tingling, pricking or numbness, skin tenderness, light headedness (dizziness), fluid retention, stress or anxiety, poor memory, vocabulary problems, tender points, irritable bowel, chronic headaches, jaw pain, painful menstration, restless leg syndrome
fatigue, hair falling out, sores in mouth and or nose, sores in head or even on your face and other parts of your body, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, tachycardia, weakness, heavy feeling on chest, abdomen swells, elevated ANA, rash on face. (to name a few)
PLEASE NOTE THAT YOUR ANA CAN BE LOW OF EVEN NEGATIVE AND IT DOESN'T NECESSARILY MEAN YOU DON'T HAVE LUPUS. THE BEST WAY TO KNOW IS SPEND TIME IN THE SUN BEFORE THEY DO LAB TO CHECK YOUR ANA. IF YOU HAVE LUPUS, THE ANA WILL SPIKE UP, IF NOT IT WON'T AFFECT IT.
In your first post you said your TSH was 40. Did you mean 4.0?
Another possiblity is Celiac Disease. This is a glutten intollerance and is sometimes associated with an autoimmune disease. Look up the symptoms to this as I'm not real familiar to this illness other than it can cause joint pain and diarrehea.
Praying for you that God lead you in your search.
Hi everyone. So my MRI was normal. After seeing opthamology, the dr. reported that I had intraocular (something) dryness and some mild exophthalmos in my left eye. It is not really noticable without measurement. Also, my contact prescription needs to be much higher with astigmatism power. Dr. said dry eyes, light sensativity, and headaches, double vision can be associated with Graves Disease eye problems. I had punctal plugs placed in the eyelid to keep moisture from draining, and it has helped somewhat. When I saw rheumatology this last time, they diagnosed mixed connective tissue disease with features of rheumatoid arthritis and sjoren's (they seem to feel the dry eyes is related to this more than any exophthalmos since it is so mild, as I also have dryness in other areas), and also possible lupus features. I did have a rash on both arms that they said looks like the scarring of vasculitis. I also do have Reynaud's. I am now on hydrochloroquine and a calcium channel blocker for when i need it for the Reynauds, which is pretty painful especially in the cold. Endo pretty much said they couldn't do much about the thyroid problems and that if there is any living cells left in the thyroid, the antibodies will eventually destroy them anyway. Basically surgery or radiation of the thyroid wouldn't help get rid of the antibodies. They would still be there. So... I am assuming a lot of this has to do with rhuem's dx and the eye stuff, though not 100% sure about the dizziness in relation to all of this, but I suppose its possible. They are keeping an eye on the eye nevus (eye mole discoloration) also. The other thing is that I have a pelvic ultrasound scheduled on monday. They have recently just drawn labs to check for lyme's and hepatitis and a few other things. I'll let you know if there are any changes based on those. Thanks for all your help and concern!
I just read all of the above posts and I think Karajo gave to some good information. Also Platletgirl with her suppliments. One thing I would keep in mind with the suppliments is, you mentioned that your heart races at times and I think I would stay away from the Gensing if you have that going on because it will make it worse. Sounds like you do have a mixed connective tissue disorder going on with a tendency towards lupus. Lupus can take a very long time to diagnose and as you know can be very deceiving. I was first dx'd with Mono and then when my Neuro. did the first real viral panel on me I came back positive for Momo, chicken pox, measles, epstein bar and cytomeglovirus. No I didn't just have the anitobodies, I was showing positive for all of the above at the same time. My Neuro. had the city called him and they wanted to come to my house and search it and quarentine because of a possible measles outbreak. It was crazy! he had to convince them that he had just seen me and I did not have the measles. Anyway. my point is even blood tests can be misleading. I have had an ANA of 1:1280 for the last year and a half and it suddenly went down to 1:640 and I was dancing and singing and thinking I'm getting better and the next week I was in the hospital with vasculitis of the heart. My ANA while in the hospital was 1:1280. So it was either a fluke or the lab messed up. But I have to say that it sounds like you have a lot of autoimmune stuff going on. I will tell you from experience. I begged for a diagnosis. I was tired of hearing what it probably was. But the way I got my final diagnosis of Lupus was not easy. You sometimes have to get sicker to find out what it is. So try to be at peace ( I know, easier said then done) and live your life inbetween all these doctors visits. I am glad you are finding some things out. Please let me know how you are. God Bless, Joni
I forgot to mention. Be careful with the Plaqunil ( hydrochloroquine ). Always take it with a full stomach. I had and I have spoken with someone who had a weird reaction when taking it. I had eatten a bowl of cereal but according to my Internest that wasn't a heavy enough meal. I was like someone had popped me a drug. I couldn't think straight, drive and was very confused. It was my third day on it and it scared me so bad I stopped taking it. Anyway, just my experience and one other persons I spoke with. Eat a full meal and I'm sure you will be fine. There are a lot of people taking it that do fine on it.
So glad you are getting some answers.
I'm sure they have told you that it takes a while before the Plaquenil to work. And Joni mentioned the importance of taking it with your meal.
Before I started Plaquenil, my hair was falling out, I was super dizzy, had been so nauseous for a year and a half (extreme nausea), along with the fatigue/weakness and joint/muscle pain. It took about 2 weeks to see some improvement, but as each month has passed I feel better and better. The reddness in my eyes is starting to go away finally. (have been taking it for 6 months.) There is some diarhea that goes along with the plaquenil, but I had that anyway with the lupus. I now rarely have diarhea. The first improvement I noticed was that my hair wasn't falling out as much. The dizziness has imporved so much. Some mornings when I'm flareing, I am dizzy. BUT THE THING I'M MOST EXCITED ABOUT IS THE NAUSEA IS NOW GONE - I can eat!!!...and enjoy eating!!!
Trixi, I still have flares. But they are nothing like they were. And they don't last very long either (just a day). I might have one, maybe two each month. Mornings are still ruff, but it may be because I also have fibromyalgia too. Some mornings I have to walk with a cane untill the pain and stiffness works out.
Do they think you still have vasculitis? Or was that something that came and went?
We know getting a dx of sojergrens, vasculitis and lupus is a hard pill to swallow. I went into a depression when my dr. told me it even looked like lupus, But just know that we are all here for you and know what you are going through. Joni has been through much more than I. (she has also had the vasculitis in her heart). We are all praying for you...for God to strengthen you and draw you to Himself. Praying for your healing and for God's love to surround you.
Update, I have to agree 100% with Karajo on the tick borne illnesses since just last week, I was diagnosed with Lyme disease. Lyme can do so much! So many people with Lyme are misdiagnosed with Lupus, RA, SLE, fibromyalgia, MS. I have never had a positive ANA nor an RH factor which is why the plethora of symptoms stumped at least 8 different doctors until I finally ordered my own lab test on-line, took it to a local lab (Labcorp) and ran the first initial Lyme test which came back positive. I figured the insurance could pay the 2nd and took it to my doctor. He ran the EIA again as well as the Western Blot. I came back positive on both. I also live in a state considered low to non-existent for Lyme. Do not believe the statistics when it comes to Lyme disease in your state. It is under reported. There are at least three people I know of in my state who have Lyme disease, yet last year there were only .8 cases of Lyme in my state. Wow, not even a whole person had Lyme disease, just 1/8th of a person according to the CDC. That isn't flawed at all, haha! Look up the movie trailer Under Our Skin and visit ILADS for more information on Lyme. The DVD should be out near the end of September. I have seen the movie and it is remarkable.
I agree, when I tested positive for Rocky Mountain no one even reported it. It made me wonder how many people with lymes get reported too. My doctor told me that they donly think Rocky Mountain can even be found in our area and therefore they don't pay it any attention. He wouldn't even turn it in...as well as all the others that have tested positive in his office. What's wrong with that picture. How many people suffer unnecessarily because they are told that disease is non-existant in their area. Maybe if there are no ticks on your little island and that's where you stay forever.
I just wanted to mention some things in case someone else has a similar experience. After being prescribed the Plaquenil, I only took it for a week and was waiting to speak to my Rheumy again about the side effect of stomach upset and nausea that I was having. But my next appointment was months away. I started to feel a little better and even started thinking *gasp* maybe I had been overexaggerating it or something, and maybe I could be ok without any meds. After a change of insurance and a move (husband went back military), I began to feel sick again. The pain came back, complete exhaustion, and I began to get very painful stomach cramping and couldnt eat for some days. Xrays showed pretty bad constipation. So I was given meds to help with that, which I can only take on occasion or get diarrhea. We moved again, and I finally got an internal med dr. Still had the abdominal pain and constipation, and joint and muscular pains had progressed. Bad mental fog, can't remember what I'm doing half the time. ha. Abdominal CT scan showed only uterine fibroids and ovarian cysts, but labs showed ANA positive with 1:640 titer diffuse shape. So, drs say it definitely looks like Lupus now. So I'm back on the Plaquenil, and hoping if I can stick with it, it will help. We now have my husbands two kids and my 1 1/2 year old, and I'm just the kind of exhausted like I like to jokingly call "feeling like death" ha. I NEED my energy. So wanted to let those of you know that sometimes the positive ANA IS elusive in tests because I had several during the past year and a half and only recently showed.
oh, I guess the bad constipation/spasms can be from the Nervous system not working right to push everything through. Lovely, some of the things this disease does to people. Not having that problem now. With Plaquenil, everything moves right through you! ugh.
Just read this and it sounds very similar to what I've been dealing with...
low thyroid FINALLY diagnosed, taking a low dose of thyroid pills every day (still feel crappy) but my doctor tells me I'm fine :) love it.
joint pain, dizziness, low grade fever, nausea, random severe pelvic pain (dr. thinks its IBS, hasn't tested for anything else :) love it.
brain fog as well and in my work I can't afford to have brain fog. I think I was tested for RA, but nothing ever came of it...please let me know what you find out, I'm so sick of this, I'm starting to think its all in my head :(
I was just scrolling the internet for some information about how I was feeling, and found a few sight including this one.
I am 24 yrs old and have been dealing with dizziness or unsteadiness for almost a year, and has only gotten worse. It almost feels like I am buzzed or if I stand still I feel like my body is still going ( kinda trippy ). I have cold hands & feet almost all the time. I have gone to the doctor often, which gets pretty spendy. I have done so much to see if anyone could help which includes:
*CT Scan - Came out Neg.
*EKG - Came out Neg.
*11 tubes of blood ( testing mostly vitamin levels) low level of D, and high B-6
*Thyroide Checked- came back mild unactivethyroide, but then became to low and took me off the meds.
I have been busy paying medical bills with No answears, it starts to play with your mind alittle... I woke up one night feeling so awkward i went to the ER....The doctor on staff was an Er doctor who told me to get an MRI done cause it could possible be MS! So I go for one in a week So we will see...and to top everything I cant sleep, I wake up in the middle of the night cause my head changed position, and get neuseas.... I also have not had a menstral in 3 months could that have effects on why its getting worse ( I took A preggo test -Neg- ) PLease Help I am going crazzzyyy you all know!!!