I'm suspecting that I may either have FM or lupus and wondering ahere I should start....with my GP or go to a specialist - rhuematologist?

I've seen individual specialists - dermatolgist, gastroentologist, neurosurgeon, etc for my various issues. None of them have suggested FM or lupus but in my research it seems like I have quite a few of the symptoms for both.

I want to get proactive with my health issues instead of treating each symptom that comes along and I'm so so so tried of feeling like crap. It's been a year since I've felt really good and if I happen to have a day that I have some energy and actually feel decent then it seems like I over do it and pay for it for days.

Thanks :)

Hi. My dr. never said anything about fibro either, I had just finally told them I needed to see someone for my pain and didn't care what kind of dr. sports, bone or even a voodoo dr. He finally sent me to a rhum. who said he thought fibro and ran some tests. Somewhere in this fobro board there is a list of fibro symtoms that might help you. If you think what you have is fibro, I'd first check out the list of symtions and if it seems like fibro to you, then talk to your dr. Keep in mind that some drs. don't believe in it or understand about it.
Good luck.
April

Hello JeanneO,

Welcome to our family, although I wish it was under different circumstances. You are definitely in the best place for care and understanding.

I am interested to know why you think you might have lupus? I only ask this as I have had SLE for over 30 years and would obviously be interested to know if you have had any visits to the doctor to give you the idea that this is what might be wrong with you. Also with the fibro query. Again is this something that has perhaps been suggested to you before.

I would personally suggest that the best person for you to see, if you are able to go directly, without seeing your GP first, is a definitely a rheumatologist. This is always the best and first doctor who wil be able to run all of the tests required and also advise you on any issues you have regarding the tests.

Plesae come back and let us now how you are doing.

goldenwings :angel:

Hi Goldenwings and April - thanks for the responses :)

I've had many illnesses and afflictions over the years, I'm 47 now and was first diagnosed with lichen planus on my extremities when I was 18. There was no information available about it back then although I remember being told that it was stress related. Over the years I've developed it on my fingernails and in my mouth and now it's believed that it's an autoimmune related issue.

I've had alopecia areata as well...another either stress related or autoimmune related issue.

Several gastro type problems....pancreatitus, illeus and gall bladder problems.

Last year I got a herniated disc C5-C6, had an anterior cervical discectomy. I have no idea how it happened, I just started hurting and after many months and many dollars of PT and it not getting any better I had the surgery. While I was waiting for my surgery my shoulder started hurting....doc wondered about abuse but not the case, I'm so fortunate to have a loving caring husband. But other than excersises from PT I didn't so anything about the shoulder until recently, had an MRI and I have a bone spur and enlarged acroniam, surgery is/was scheduled for 11/15 but I haven't felt comfortable with my ortho so I'm seeing someone new on Mon for a 2nd opinion.

Anyway, I'm most concerned about the autoimmune issues and I'm also in alot of pain...it seems like I'm in more pain than a bone spur would warrant. I have muscle pain and burning between my shoulder blades and in my neck that isn't being relieved by the NSAID or OTC meds.

I'm so tired of feeling bad, I would love to go out dancing with my husband but know that there is no way I can. Just working is taking all the energy I have.

When I read the symptoms of both lupus and fibro I have many of both. Also when I read some of these threads I've had many of the same experiences....growing pains, walking pnuemonia when I was 13 (allergy to sulpha drugs was discovered then) suffered sexual abuse, had an extemely traumatic divorce 5 years ago, post traumatic stress syndrome, adrenal glands went completely after that, have had my thyroid tested several times because I have signs of thyroid issues but it comes back normal, pain pretty much all the time (lately anyway), autoimmune disorders.

So here I am trying to figure out what the heck is wrong with me.

I'm suspecting that I may either have FM or lupus and wondering ahere I should start....with my GP or go to a specialist - rhuematologist?

I've seen individual specialists - dermatolgist, gastroentologist, neurosurgeon, etc for my various issues. None of them have suggested FM or lupus but in my research it seems like I have quite a few of the symptoms for both.

I want to get proactive with my health issues instead of treating each symptom that comes along and I'm so so so tried of feeling like crap. It's been a year since I've felt really good and if I happen to have a day that I have some energy and actually feel decent then it seems like I over do it and pay for it for days.

Thanks :)

Welcome, It sounds like you have been through the loop with doctors...have you had the usual blood work done ie: CBC, CMC, hormone levels, thyroid function, autoimmune disorders or other infectous diseases...?? Lupus shows up under the autoimmune disease panel as a positive or negative, usually, and CFS, CFIDS and FMS or all dx by elimination through testing.

Is your primary care doctor young or new to the field, having graduated from med school in the late 1990's? The reason I ask, is that doctors from that date on are trained to know the signs of these illnesses for dx and how to initially treat the fatigue, sleeplessness, and pain (somewhat.)

"Proactive" is the key, if you haven't ask for the copies of your lab work, its a good idea to do so. That way, you have them to share with other doctors you see along this journey. And you might find areas in the blood work that the doctors have dismissed stating everything reads normal, when infact they're either in Bold out of range or at the very low or very high end of it (I did!)

The doctor that I see now, an endocrinologist, addresses all the issues in my lab, and I'm having better results, (I was kinda pee-owed with my pcp, who kept saying everything was okay with the blood work...) Also jot down how your feeling each day, along with your temp and if low blood pressure is an issue note this daily as well.

I know so well the 'over doing it' too, I see a PT once a week, who has been my coach, she helps me to remember my P's and Q's with this. She also, is helping me to to exercize starting very slowly with the treadmill ( I'm doing less and slower than 80 year olds ( :eek:) It's kinda cute, being 46 and 5'3'! But, that's where I also have a massage once a week, both have really helped, I recommend it very much.
uvm

I'm suspecting that I may either have FM or lupus and wondering ahere I should start....with my GP or go to a specialist - rhuematologist?

I've seen individual specialists - dermatolgist, gastroentologist, neurosurgeon, etc for my various issues. None of them have suggested FM or lupus but in my research it seems like I have quite a few of the symptoms for both.

I want to get proactive with my health issues instead of treating each symptom that comes along and I'm so so so tried of feeling like crap. It's been a year since I've felt really good and if I happen to have a day that I have some energy and actually feel decent then it seems like I over do it and pay for it for days.

Thanks :)

Welcome, It sounds like you have been through the loop with doctors...have you had the usual blood work done ie: CBC, CMC, hormone levels, thyroid function, autoimmune disorders or other infectous diseases...?? Lupus shows up under the autoimmune disease panel as a positive or negative, usually, and CFS, CFIDS and FMS or all dx by elimination through testing.

Is your primary care doctor young or new to the field, having graduated from med school in the late 1990's? The reason I ask, is that doctors from that date on are trained to know the signs of these illnesses for dx and how to initially treat the fatigue, sleeplessness, and pain (somewhat.)

"Proactive" is the key, if you haven't ask for the copies of your lab work, its a good idea to do so. That way, you have them to share with other doctors you see along this journey. And you might find areas in the blood work that the doctors have dismissed stating everything reads normal, when infact they're either in Bold out of range or at the very low or very high end of it (I did!)

The doctor that I see now, an endocrinologist, addresses all the issues in my lab, and I'm having better results, (I was kinda pee-owed with my pcp, who kept saying everything was okay with the blood work...) Also jot down how your feeling each day, along with your temp and if low blood pressure is an issue note this daily as well.

I know so well the 'over doing it' too, I see a PT once a week, who has been my coach, she helps me to remember my P's and Q's with this. She also, is helping me to to exercize starting very slowly with the treadmill ( I'm doing less and slower than 80 year olds ( :eek:) It's kinda cute, being 46 and 5'3'! But, that's where I also have a massage once a week, both have really helped, I recommend it very much.
uvm