I agree that could be the problem. They are running labs to check my electrolytes (potassium, sodium, etc). I'm certainly hoping that's all it is, although along with the burning, tingling sensations I think it may be more likely neurological which is why they referred me to the neurologist. I really hope that whatever it is, we figure it out so I can do whatever I need to do to take care of it. Thanks for the suggestion and support. It is greatly appreciated! Heymj
Sheri said:
Your potassium levels may be low and causing leg cramps. It happens to a lot of us. I've also had the burning and tingling for years. It comes and goes. I take prescription potassium supplements that help a lot. I wish you luck and feel better soon.
I've been working on my diet/health for awhile as well. I really hope that I can get whatever I need to make this go away as it is really no fun! Thanks for your advice and support. Heymj
Carla Ulbrich said:
I had the nerve pain you're talking about and for me, neurontin solved it. I was doing a bunch of alternative medicine and diet change to build up my health and was able to get off the neurontin after a few months, but it was Godsend for those few months. I hadn't had a proper night's sleep for maybe a year before the neurontin.
Now I am really concerned. I am not a doctor just a concerned Lupus sufferer. The Reticularis Livedo and mottled rash are vasculitis symptom rashes. Please go to vasculitis websites and look. Be sure you write down all your symptoms that are on there to give to your doctor. Also request all ANCA testing. At least the treatment is pretty straight forward and many types can go away. Mine doesn’t but I don’t have the mottled rash or Reticularis Livedo either. Just the vasculitis sores. Please keep me updated! I would love to compare notes with you after your doctor appointment. By the way, do you have RA and Sjogren’s as well? Apparently having all three increases vasculitis risk. Even though it is very rare it’s something the Rheumy/Neuro need to look at. Please understand I’m not trying to scare you. I have just been suffering from this for so long I don’t want anyone else to have to go through this. Take care! Hugs-Tina
I really appreciate the help and don't feel that you are trying to scare me at all. I don't have Sjogren's or RA, just Lupus, that I know of. I have what I consider to be a healthy level of distrust when it comes to doctors for a number of reasons. So I do my homework. I have checked out some vasculitis websites and the symptoms certainly suggest that I may have some sort of vasculitis going on and I will definitely bring this up when I see the neurologist. Problem is, I may not see him/her for some time. My referral just got sent over and it takes them a few days to process, then it will depend on how busy the person's schedule is. Basically it could be up to 6 weeks before I see anyone. In your opinion, should I push for something sooner? I also plan on calling my rheumy first thing on Monday. He will hopefully get me in sooner....... I'll keep you posted for sure! And thanks! Heymj
tinapet said:
Heymj,
Now I am really concerned. I am not a doctor just a concerned Lupus sufferer. The Reticularis Livedo and mottled rash are vasculitis symptom rashes. Please go to vasculitis websites and look. Be sure you write down all your symptoms that are on there to give to your doctor. Also request all ANCA testing. At least the treatment is pretty straight forward and many types can go away. Mine doesn't but I don't have the mottled rash or Reticularis Livedo either. Just the vasculitis sores. Please keep me updated! I would love to compare notes with you after your doctor appointment. By the way, do you have RA and Sjogren's as well? Apparently having all three increases vasculitis risk. Even though it is very rare it's something the Rheumy/Neuro need to look at. Please understand I'm not trying to scare you. I have just been suffering from this for so long I don't want anyone else to have to go through this. Take care! Hugs-Tina
I have survived this for about two years looking back. However, I have been hospitalized when my lungs and gastrointestinal tract had issues. So if you feel sick go to the ER don’t try to second guess it. If its just being irritating but you still function okay you may be fine. Just listen to your body. If you lose function, get more tired than usual, have heart issues, chest pain, weird headaches, severe pain, cough or diarrhea then go in. As I have learned “Tis better to be safe than sorry”. LOL! I pray for the best for you! Hugs-Tina
I will heed your advice and listen to my body. Right now it is just being irritating, and is somewhat better today than it has been. Probably because I've been resting more. Stress and/or getting overly tired really seems to make things worse. I'll be working again tomorrow and it's supposed to be really hot here so we'll see how things go. I agree with you though - it's better to be safe than sorry, so I'll give my rheumy a call and let him know what's going on. Hopefully, he will get me in and I can at least get something for pain relief (gabapentin or Neurontin). Anyway thanks for the prayers and the good information! Hugs-back, Marti (short for Martha) And I will definitely keep you posted.
Hi, sometimes the pain comes very strong if we think about it when we are having the pain moment!!! Yes I know that sound crazy, but I you feed into the pain(paying a lot of attention ), it will get very bad!! Yes take the meds., as suppose , and relax, don’t think about how bad you are feeling , this works for me !!! And when I wake up am ready for the next round… Good luck…Beverly L.
Thanks for the info. It helps to know what to expect. I expect it will get easier as time goes on. It's interesting because it seems like the issues have gotten much better since I've rested. Still there but not as bad. I guess it's just a different kind of lupus flare. It feels to me almost as if the disease moves around and attacks different parts (or systems) of the body. I normally have mouth sores that signal to me that a flare is coming on. This time I had no mouth sores. It's just hard to get a handle on it I guess. And for me, every time there's something new, I go into a bit of a panic. Anyway, thanks for the support! I really appreciate it! Hugs back, Marti (short for Martha)
jujubeee said:
As someone else said, your neurologist can prescribe you appropriate medications for peripheral nerve problems such as lyrica, cymbalta, elavil, neurontin. They are your first line of treatment for nerve pain.
You will likely be further tested with an MRI to make sure nothing is going on in your brain (usually just a check for things like MS lesions) and given an EMG (nerve/muscle study) which is not really painful at all and done in the neuros office to see if the messages from your brain are going at the right speed to your nerves and muscles. This is not scary. You may also have an EEG which is also a quickie test in the neuros office to look for any abnormalities in your brainwaves. This will tell if you are having any slowing, etc that can cause things like seizures.
After all that is said and done and the results come in there are still things you can do to minimize pain. There are procedures like radiofrequency ablations and cortisone shots that can help you with some nerve problems and other pain meds that can be tried if necessary. After your done with the neuro a referral to a pain management clinic that has procedures to offer is the route usually taken if you are not getting relief from the meds the neuro gives you.
I've tons of nerve problems (peripheral and cranial) and a seizure disorder..feel free to ask me anything. I''ve been dealing with nerve problems many many years and can tell you that is possible to manage your life. It will get better and there are things you can do to improve quality of life.
I totally agree with you there. And I'm sure I do that sometimes. It's a tough balancing act I think because you don't want to ignore things, especially if they're new or different. You also want to be able to tell the doctors what's happening when they ask. Yet dwelling on it makes it worse for sure. What works for me sometimes with the pain is to imagine a dial, that is turned up too high. I imagine turning it down and it often helps with the pain. At least temporarily anyway. In any case, very good advice. Thanks!
Beverly L. said:
Hi, sometimes the pain comes very strong if we think about it when we are having the pain moment!!! Yes I know that sound crazy, but I you feed into the pain(paying a lot of attention ), it will get very bad!! Yes take the meds., as suppose , and relax, don't think about how bad you are feeling , this works for me !!! And when I wake up am ready for the next round.. Good luck....Beverly L.
I totally agree with you there. And I’m sure I do that sometimes. It’s a tough balancing act I think because you don’t want to ignore things, especially if they’re new or different. You also want to be able to tell the doctors what’s happening when they ask. Yet dwelling on it makes it worse for sure. What works for me sometimes with the pain is to imagine a dial, that is turned up too high. I imagine turning it down and it often helps with the pain. At least temporarily anyway. In any case, very good advice. Thanks!
Beverly L. said:
Hi, sometimes the pain comes very strong if we think about it when we are having the pain moment!!! Yes I know that sound crazy, but I you feed into the pain(paying a lot of attention ), it will get very bad!! Yes take the meds., as suppose , and relax, don’t think about how bad you are feeling , this works for me !!! And when I wake up am ready for the next round… Good luck…Beverly L.
THANKS!!! I can't tell you how nice it is to have someone there who understands. Marti
jujubeee said:
Marti, that's exactly what it's like. Unpredictable. You'll get to know your own body I'm sure of it. And rest does WONDERS. Staying out of the sun does WONDERS. The right meds does WONDERS. So hang in there. Your managing it just fine. Just take it as it comes. :) Love Julie
heymj said:
Hi Julie,
Thanks for the info. It helps to know what to expect. I expect it will get easier as time goes on. It's interesting because it seems like the issues have gotten much better since I've rested. Still there but not as bad. I guess it's just a different kind of lupus flare. It feels to me almost as if the disease moves around and attacks different parts (or systems) of the body. I normally have mouth sores that signal to me that a flare is coming on. This time I had no mouth sores. It's just hard to get a handle on it I guess. And for me, every time there's something new, I go into a bit of a panic. Anyway, thanks for the support! I really appreciate it! Hugs back, Marti (short for Martha)
jujubeee said:
As someone else said, your neurologist can prescribe you appropriate medications for peripheral nerve problems such as lyrica, cymbalta, elavil, neurontin. They are your first line of treatment for nerve pain.
You will likely be further tested with an MRI to make sure nothing is going on in your brain (usually just a check for things like MS lesions) and given an EMG (nerve/muscle study) which is not really painful at all and done in the neuros office to see if the messages from your brain are going at the right speed to your nerves and muscles. This is not scary. You may also have an EEG which is also a quickie test in the neuros office to look for any abnormalities in your brainwaves. This will tell if you are having any slowing, etc that can cause things like seizures.
After all that is said and done and the results come in there are still things you can do to minimize pain. There are procedures like radiofrequency ablations and cortisone shots that can help you with some nerve problems and other pain meds that can be tried if necessary. After your done with the neuro a referral to a pain management clinic that has procedures to offer is the route usually taken if you are not getting relief from the meds the neuro gives you.
I've tons of nerve problems (peripheral and cranial) and a seizure disorder..feel free to ask me anything. I''ve been dealing with nerve problems many many years and can tell you that is possible to manage your life. It will get better and there are things you can do to improve quality of life.