Hi. I have been very ill for nearly 3 years.
Some symptoms ymptoms come and go. I experience episodes lasting from a few days to a few weeks.
extreme Flu like muscle pain
Varying degrees of fatigue
Numbness and tingling in hands and feet (hands are completely numb in the morning)
tingling like an electrical current in center of back and has recently started in arms and legs
swelling in ankles
Hair loss (bald patches and overall loss)
Overeating and constant hunger
cravings for sweet and salty food
Extreme fatigue with overwhelming need to sleep several times a day.
Stomach gurgling and hollow
Lack of hunger
loss of color in face (my skin literally turns gray)
pain in abdomen followed by diarrhea or loose stool
I have also had other strange skin symptoms including fungal infections, shingles and hyperpigmentation
Meds are fentanyl, vicodin, hydrocortisone and gabitril
Due to cortisol levels I was Dx with adrenal insufficiency and fibromyalgia. I don't think all of my symptoms fit either Dx.
Well my most recent labs came back and my dr. mentioned lupus because of a positive ANA, titer 1:60. However, he said I would most likely have a rash on my face and/or a low WBC count. A Lupus panel was ordered and it appears to be negative. The results are
What next? I don't know how much more I can take. I need a proper diagnosis to keep going. The not knowing is really depressing, especially when I am so sick. Do I give up on Lupus? I don't know much about it but many of the symptoms fit. My drs are busy and dismissive so I have to push for everything.
Octorus, hi. I'm sorry you're dealing with so much. I just read some things about Addison's, and did find quite a few of your symptoms cited: hyperpigmentation, craving for salty foods, muscle pain, fungal infections (thought to sometimes trigger Addison's, in fact), etc. But I'm just a dumb patient with a computer! I think all you can do is read and ask pointed questions. For example, does ANA elevate in Addison's? What might explain your hair loss: Addison's, or another autoimmune (like alopecia), etc.? Does Addison's explain your gray pallor and your chest pain? (Have you seen a cardiologist?) Are there other conditions more likely in patients who already have Addison's? Are any of your symptoms possibly drug side effects?
As to whether you might have lupus: have you read the diagnostic criteria? To support a Dx, you generally must meet at least 4 of the 11 criteria listed in the "sticky post" (= permanent info post) at the top of the thread list. Note these may be met over time, not necessarily all at once.
The specialists most conversant with lupus are rheumatologists. What's your dr.? For the record, not everyone with lupus gets a malar (facial) rash, and I'm pretty sure not everyone with lupus has a low WBC! So I'm not sure why your dr. ruled out lupus because those two things don't apply---but maybe it was more that he didn't find anything especially "lupus-like" in that one set of blood results?
How long have you taken these meds? Steroids cause many people to eat more & gain weight, cause heart palpitations, heartburn, diabetes, thin skin, bruising, bone loss, glaucoma, increased vulnearbility to infections, etc. due to supressed immune system, ETC. The list is so long that one lupus author described steroids as "both a blessing and a curse".
More later, must run errand. Bye for now, warm wishes, Vee
Actually my new endo said she didn't think I had addison's and tested my cortisol. On the hydrocortisone it was normal. I don't know what to think and neither do the drs. Addison's, even if I do have it, doesn't explain all of the symptoms.
I agree with you that another problem is the meds. I've been on them for so long now I don't know what's me, what's the meds or even what's normal. I do know that my symptoms haven't changed too much since I started taking the hydrocortisone which is the med that would cause the most side effects. The only real "new" symptom is the numbness in hands and feet and the skin problems. I also read that those can be lupus related. The funny thing about the numbness is it started around the time my ANA became positive. I've had many ANA tests and only recently have they been positive and I have also been feeling much worse lately.
Another strange thing on my bloodwork is my triglycerides. It is 309 (<150 normal). I am a thin vegetarian who eats mainly organic and no gluten. Why are my triglycerides so high? None of the other cholesterols are off.
Gabitril is an anti seizure drug for my fibromyalgia nerve pain. My rheumatologist prescribed it but I don't think it does anything though.
I guess I'm just trying to figure out what to do next. SLE seemed like it fit but I only have 2, maybe 3 of the ACR criteria although I'd say I have at least 4 of the symptoms of SLE that are listed.
Any help would be greatly appreciated. I need to be healthy because my kids are very sick. I have to be able to care for them and every day it gets harder and harder.
Octorus, have you seen a dermatologist or dermatopathologist (that's a dermatologist & pathologist, who does his own labwork)? Maybe your skin problems, looked at more closely, could reveal some more clues? The seventh---yikes!---dermie I saw for my chronic rashes did specialized tests the previous ones hadn't.
I assume your endocrinologist regularly tests for diabetes? Steroids also raise the risk for that... and numbness can be a symptom.
Do you know which ANA measuring system was used for the 1:80? There are two systems of measurement used, I think. In one, 1:80 would be low-positive; in the other, it would be high. But ANA is only a threshold test. It can be positive in many conditions, in endocrinology, rheumatology, ETC., so *more specific* tests are typically done if it's positive.
Did your earlier drs. do the special Addison's tests that can narrow down the root cause of adrenal insufficiency---to primary vs. secondary---and to hypothalamus, pituitary, etc? I know so little about Addison's & didn't realize there could be different causes.
My tiniest friend has high cholesterol and triglycerides. They can elevate in really small, diet-conscious people. Even so, you could ask with what conditions they can correlate.
Do you always get copies of your labs? Always good to keep your own file!
I hope others chip in with ideas for more questions. I hope you keep posting. And I'm so sorry your kids have health problems---your plate is just too full! Until later, best wishes to all them & you. Sincerely, Vee
Veej- dermatologist is a good idea. I don't have the rash right now but next time I will go to a derm instead of regular dr. Both times he said it was ringworm. I read another post on here where a lupus rash was misdiagnosed as ringworm so I definitely want an expert opinion. I didn't question the Dx before but thought it strange that I had ringworm and it took such a long time to go away.
The Addison's diagnosis- I did have a specialized test done. It took forever for the insurance to approve it and finally it was done but the dr did not do a baseline reading, rendering the rest of the results useless. I should have the test redone and probably will ask my new endo to do it.
The kids being sick takes away from my treatment. They come first. Financially, emotionally and just finding time all factor in. It's exhausting having a "mystery" illness and sometimes I just throw my hands up (especially when the dr did the test wrong) and say forget it.
I was hoping against hope that the lupus panel would show something conclusive and I could just say Ok, this is it and deal with it. I know some people go longer but 3 years of constant pain and no good diagnosis is just plain awful. I wake up every morning feeling like I got run over by a truck while sleeping. My husband doesn't understand and I can't bear to worry my kids when they have so much of their own to worry about (cerebral and pulmonary AVMs) so I try to be OK all of the time even when I feel terrible.
Thank you for the responses and advice. That's good to know about the triglycerides. I think most people equate high cholesterol with unhealthy weight and eating and I just don't know much about it.
I do keep a copy of my labs but I don't see any specific type of ANA test mentioned. Guess I will wait and see what the dr says, although I'm pretty sure I know what it will be.