I would find another Doctor if it were me if you are able to. One that listens better!

Hi Miki, I have lupus and fibro, and when both flare, I become extra fatigued and my hands/fingers and toes/feet would be sore, red, inflamed and swollen. Perhaps you should consult a rheumatologist to do some blood works to see if you have developed an autoimmune disease on top of the fibro. As a lupus sufferer, the amitriptyline would not provide relief for the fatigue, and arthralgia that you are suffering from. You would need a disease modifying drug such as Plaquenil, or an immunesuppressant such as prednisone to treat the inflammation. Hoping that your doctor would provide treatment soon. Best wishes, Marie

This doctor has consistently down played or outright ignored your health complaints for some time. Frankly, I'm surprised that she missed your feet and hands. My doctor checks both when I have a physical. Get someone else and pronto. You need a firm diagnosis on why you continue to be so fatigued with swollen fingers and toes.

Technically she didn't miss my hands, she's well aware of the symptoms after almost 2 years. I didn't bother to mention my feet and they only make diabetics or people with known issues take socks off. I know my toes aren't dying so no sense in having her tell me that. My hands have been xrayed and apparently look normal, lab work for autoimmune conditions was negative although I know that doesn't mean I don't have one, and is a year old. I saw a rheumatologist last year who could see the abnormalities in my fingers from across the room but since the blood and X-rays were inconclusive told me to follow up with my PCP. I had an EMG a couple months ago to check out intermittent numbness or tingling in my right hand and feet, that was normal too. I'm also considering getting a referral to a rheumatologist outside this hospitals network, or a hand specialist maybe. I still think this is autoimmune based on symptoms and family history..

Oh and I did follow up with my PCP after the rheumatologist appointment and she said she didn't know and basically to wait and see what happens. When I went back this winter for the numbness and tingling she said it was dermatitis because my hands were also dry at the time (because, winter). But my feet looked normal at the time and she gave me the option of doing the EMG.

HI Miki, the autoimmune bloodworks fluctuate within days/months, and the autoimmune markers would show up whilst you are flaring (which is now) whereas these parameters would be in normal range when your autoimmunity is quiescent. Perhaps your autoimmune markers would show up as positive now so it would be worthwhile to consult another rheumatologist and repeat the test. People still have autoimmune diseases even if their autoimmune markers are negative. For example, certain people who have lupus would have a negative ANA compared to other lupus sufferers who test positive.

I had numbness and tingling in my hands and feet a few years back when I was suffering from acute lupus flaring, and these symptoms were diagnosed as peripheral neuropathy. The paraesthesia is due to our autoimmune antibodies attaching to our sensory nerve fibres in the hands and feet, and mistakenly identifying the nerve receptors here as foreign bodies to mount an attack against. If the nerve damage is in the small sensory fibres, then these small sensory nerves will recover and grow back over time, at which point the paraesthesia would improve or disappear. If the nerve damage is in the large nerve fibres that attach to the spinal cord, then the nerves may not recover as such that you would have numbness and tingling (and jerking) sensation permanently. But if your rheumy identifies the autoimmune flaring and provides treatment quickly with an immunosuppressant, then the inflammation will be attenuated and the nerve damage shall be limited. However, peripheral neuropathy is a less serious symptom than other autoimmune damage, such as in the heart, lungs, brain, muscles, Kidneys etc...

You can also help yourself by eating a diet rich in fruits, vegetables, whole grains and lean protein to keep the nerves healthy. Protect against vitamin B-12 deficiency by eating meats, fish, eggs, low-fat dairy foods and fortified cereals. If you're vegetarian or vegan, fortified cereals are a good source of vitamin B-12, but you would need to talk to your doctor if wanting vitamin B-12 supplements. Your doctor would need to do a B12 blood test to see if you are deficient in this vitamin. You can also ask the doctor to check for vitamin B6 deficiency through a blood test, to rule out the cause of the peripheral neuropathy.

As Fantod and AngelaJO have mentioned, if you are not confident with a rheumatologist, seek a second opinion (or third opinion) from another rheumy. Autoimmune diseases are difficult to diagnose, and the doctors would take a few trials and errors to define the disease because the symptoms tend to develop and accumulate over time. As time progresses, the diagnosis of the type of autoimmunity would be continually revised. Hope this helps. Good luck, Marie

Thanks Marie, that does help. I think one of my concerns about finding a new rheumatologist was that I literally waited 9 months for the first appointment-so no guarantee they'll see me when things are flaring up. The EMG showed no damage to the nerves but of course it could just be mild enough to not show up. I do eat a healthy (for the most part, I do love all things chocolate) and varied diet, lots of fruits, veggies, whole grains and mostly lean protein-some from animal sources, some from plants. And I take a B12 supplement. I have done a lot of research on diagnosing autoimmune disease, since we don't do it often in veterinary medicine (and the more common conditions are very different than what I'm experiencing, like IMHA in dogs), so I know bloodwork and X-rays aren't necessarily reliable in ruling something out. And I mentioned in check in, I found a new skin lesion on my elbow that makes me suspicious of psoriasis. PsA is on my short list of potential causes. My mother has it. I've had a lot of skin issues but mainly from eczema, although it doesn't behave 100% like eczema typically does (worst in the summer, different areas than you commonly see it, never had it as a kid-my body doesn't like to do anything "right"), and this is definitely not eczema. I took pictures in case it disappears, and I have pictures of my hands and feet too. Anything I can document, basically. Guess I'll be calling local rheumatologists next week. I guess if I get desperate I can go to Boston, the best specialists on this side of the country are there, but I hate going. Too congested and I'm not good at driving or navigating around there.

Hi Miki, if you contact the rheumy's surgery and request them to send you a blood form that orders for a full autoimmune panel, ahead of the appointment, then you can capture the bloodworks for the flaring more accurately. My rheumy always gives me the blood forms before I arrive at the appointment so that she could detect flaring inbetween appointments. When doctors see irregular blood works, they would push up the appointments so that you can see them earlier.

I have discoid lupus so I would have raised lesions in sun exposed areas. Your dermatologist can take biopsies of the lesion to rule out this diagnosis. I also have Raynauds syndrome with the pinkish purple hands and toes with changes of weather. It's another sign of an autoimmune condition. Unfortunately with AI, you will accumulate many AI syndromes as time progresses. Hoping that everything will work out for you. Have a great weekend ! Marie