I am feeling really overwhelmed right now. I have been having leg cramps, tingling and burning in my legs and arms, plus some hand tremors for the last few months. This seems to get worse at night. I finally decided to go see my regular doctor because I don't see my rheumatologist for another 4 weeks.
He referred me to a neurologist. I know this is good because we need to find out what's going on, but it is also scary. I just feel overwhelmed because I feel like I never know what's going to happen next with this ##??>> disease.
He's also into alternative treatment so he recommended fish oil to help with inflammation, but I'm having a really hard time sleeping due to the pain at night. The leg cramps and pain are really uncomfortable. I have hydrocodone for pain, but I am only supposed to take 1 7.5/325 pill per night. That isn't even touching it. I don't want to be an addict but I also don't want to be in pain.
Mostly I'm just frustrated and scared.
Any support or suggestions would be most appreciated.
I don't have any helpful suggestions, but I'm here to support you :) I can understand the feeling of being scared of becoming an addict. I was on hydrocodone when I had meningitis just a few years ago. I would be in tremendous pain and would resist taking it, thinking that with every one I took, I was weakening my resolve not to become addicted. I no longer need it and I never did become addicted. Have you at least called your rheumatologist to update him/her on your pain? Keep your rheumy in the loop even if its just a phone call. I really hope you find some relief and answers soon. Try (I know its super hard) to take things 1 day at a time, maybe even 1 hour at a time. ((HUGS))
I have had that as my primary symptom. Sounds like nerve pain. Only thing that helps me is gabapentin (neurontin) and cymbals. Nerve pain is always worse at night. Do you have neck or back problems?
Typical pain relievers do nothing for neuropathic pain. Neurologist should hopefully give you some suggestions. I have bounced around from rhetmotogist to neurologist for the past 15 years. Hope u find some relief. Do ur feet turn red and feel extremely painful to walk on? Good luck and hang in there. Meds can def help but need the right kind. Let us know how you make out
Thanks for the suggestions and support. I know I should call my rheumy. I will call him.
Yeah, I'm thinking it's nerve involvement just haven't had it before so it's something "new" to deal with. I have some pain in my feet in the am when I first get up and my feet also hurt along with everything else when the pain is very bad at night, but I've not noticed any color changes. It hurts to walk but mainly because of pain in my hips, not so much my feet. I hope someone gives me something to make me feel better. I am tired of hurting!
Hi lambchop, I was just referred to neurologist. I have horrible neck and lower back pain that no muscle relaxer or hydrocodone can touch. Is it nerve pain?
lambchop0103 said:
I have had that as my primary symptom. Sounds like nerve pain. Only thing that helps me is gabapentin (neurontin) and cymbals. Nerve pain is always worse at night. Do you have neck or back problems?
Very good advice about taking it one day at a time. I definitely try to do that although every time something new comes along I get thrown off and start worrying. But worrying never solves anything and in this case it makes things worse due to increasing the stress which leads to....worsening symptoms! Such a vicious cycle! So thanks for the reminder and the hugs. (((hugs))) back. heymj
nates tired mom said:
I don't have any helpful suggestions, but I'm here to support you :) I can understand the feeling of being scared of becoming an addict. I was on hydrocodone when I had meningitis just a few years ago. I would be in tremendous pain and would resist taking it, thinking that with every one I took, I was weakening my resolve not to become addicted. I no longer need it and I never did become addicted. Have you at least called your rheumatologist to update him/her on your pain? Keep your rheumy in the loop even if its just a phone call. I really hope you find some relief and answers soon. Try (I know its super hard) to take things 1 day at a time, maybe even 1 hour at a time. ((HUGS))
Hi I have these symptoms too. And under a neurologist too. Been told atm that it is migraine induced vertigo however also believe some tablets ( for gastric problems) I have been on may have caused a Vit B12 deficiency. I will be having a brain scan soon to rule out MS (other symptoms involved). So I echo all the advice re: Vit B12. I hope you get to the bottom of it and let us know how you get on.
I have had all if these for months as well. Plus I do have B-12 deficiency and Vit. D deficiency. I ended up in the hospital as I got an upper respiratory infection which collapsed the bottom lobes of my lungs from the inflammation. It got to where I could not walk! The nerve pain and numbness are awful! Gabapentin (neurontin) helps tremendously! I’m on 900 mg. a day. It’s been a life saver. The tremors have lessened as well as the pain. I am telling you all thus because it turns out I have Vasculitis! It’s really rare but happens with Lupus and RA. Please get checked for this too! It can be horrible. I thought I was going to die in the hospital. Been in rehab over a month now trying to learn to walk again. Stay on your doctors until you get it figured out please! Hugs-Tina
Hi I have it too. I have vasculitis. Which has caused brain issues shown in brain spect. And it was what finally diagnosed lupus after 10 years of begging doctors to figure out what is wrong with me. I have an amazing Rehumatologist now that I can call up any time and see when I need. She is the one that has been following me for two years even before she could verify lupus as all my blood tests are usually normal. She put me on Gabapentin and it is helping as I do not like the pain meds either. Topamax at night helps me as well for the migraines. I am also doing Rituxan infusions right now. The tremors, the itching, the pain the memory and brain fog is all part of it. I have a great neurologist that I work with as well. Pain meds don’t help me but you need some rest or it will just get worse. If you aren’t getting the right help you need get a second opinion. Go to a different doctor. I had to change doctors and fight for a long time. My family often doesn’t believe me. If you don’t stay on them they will think it is nothing. I have an iPhone app where I track my symptoms every day and I email them to my doctor when she wants to know if it is really an issue. Keep a diary and show it to them. It has been a fight but I am finally getting the right treatment even if I am getting sicker unfortunately. I am having to go on leave again. But it will get better it always does. good luck.
I'm so sorry to hear about things getting worse for you! I hope it does get better. I am definitely keeping a pain/symptom journal and I am also in the process of trying to change doctors. My current rheumy is better than the first one but is getting up there in years (70?) and sees way too many patients to be really effective. So I'm in the middle of switching which complicates things a bit as far as communication. But after the advice here, I think I will call him first thing on Monday and let him know what is going on. I also agree that rest is key. If I get overly stressed or overly tired, the symptoms get much worse so I know that I need to rest. And I also agree that advocating for myself is what is necessary, even if it is exhausting and frustrating. Anyway, thanks so much for your input and support. It is greatly appreciated. Heymj
Michela said:
Hi I have it too. I have vasculitis. Which has caused brain issues shown in brain spect. And it was what finally diagnosed lupus after 10 years of begging doctors to figure out what is wrong with me. I have an amazing Rehumatologist now that I can call up any time and see when I need. She is the one that has been following me for two years even before she could verify lupus as all my blood tests are usually normal. She put me on Gabapentin and it is helping as I do not like the pain meds either. Topamax at night helps me as well for the migraines. I am also doing Rituxan infusions right now. The tremors, the itching, the pain the memory and brain fog is all part of it. I have a great neurologist that I work with as well. Pain meds don't help me but you need some rest or it will just get worse. If you aren't getting the right help you need get a second opinion. Go to a different doctor. I had to change doctors and fight for a long time. My family often doesn't believe me. If you don't stay on them they will think it is nothing. I have an iPhone app where I track my symptoms every day and I email them to my doctor when she wants to know if it is really an issue. Keep a diary and show it to them. It has been a fight but I am finally getting the right treatment even if I am getting sicker unfortunately. I am having to go on leave again. But it will get better it always does. :) good luck.
Thanks for your support and advice! I am so sorry you ended up in such bad shape! That must have been terrifying. This is all pretty scary if you ask me. I will definitely ask then to look for vasculitis, and I may do some sleuthing on the web to find out more about it. I really, really hope they give me something that works for the pain, cramps, tingling, etc. It is really hard to get any rest when it's bad like this. I'll definitely stay on the doctors about this as it sounds like it could get worse if I don't. Thanks again, Heymj
tinapet said:
I have had all if these for months as well. Plus I do have B-12 deficiency and Vit. D deficiency. I ended up in the hospital as I got an upper respiratory infection which collapsed the bottom lobes of my lungs from the inflammation. It got to where I could not walk! The nerve pain and numbness are awful! Gabapentin (neurontin) helps tremendously! I'm on 900 mg. a day. It's been a life saver. The tremors have lessened as well as the pain. I am telling you all thus because it turns out I have Vasculitis! It's really rare but happens with Lupus and RA. Please get checked for this too! It can be horrible. I thought I was going to die in the hospital. Been in rehab over a month now trying to learn to walk again. Stay on your doctors until you get it figured out please! Hugs-Tina
Oh wow! Can’t believe I met two with vasculitits! I have CNS/PNS Vasculitis. Where is the best place to learn about it! Also can you message me with the phone app? I started swelling again and not sure why because I am on 80mg steroids now and 2000mg. CellCept. I can’t take Rituxan and so we are trying Benylsta. If that does not work I have to take Cytoxan IV which really scares me. Have either of you been in that? I really appreciate your help. Get well everyone! Hugs-Tina
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.
Do you have any swelling anywhere like your feet, legs, hands? Redness or any spots you thought were Lupus? I had some on my arms and legs. Not too many only like five little ones. They started out reddish purple and now are kind of brown in color but I found out these spots are vasculitis NOT Lupus rash! I still get the butterfly rash on my face though. Just a few more clues that I learned this week. I hope you don’t have it but none-the-less you need to let your doctor know so he/she can get the fluid off your nerves because it can damage them. Get well soon! Tina
The app I use is called Symple you can enter your symptoms and track them daily. Add alarms so that you remember to track them. It even allows for pictures in case u need to show something etc. I like it because then it allows me to make graphs that I can send to my doctor so she can see my pain levels and my issues because I forget a lot of time what is going on by the time I go see her. In regards to Cytoxyn I was told I had to do that but I convinced my neurologist and Rehumatologist to do Rutaxin again and see if it works this time. It worked for the RA for a few months last time but it did not work for my CNS issues. I am afraid I will have to do it in 6 months. My docs worry as I am very prone to infection and that can make me sick but so is Rituxan and I haven’t had an infection since January. But I have had just about everything else. I say give me whatever works!
Thank you! I will get that app too. It sounds helpful. I took Rituxan and was sooo allergic to it I had to stop. I made it through 2 infusions…barely. Then had to fight the allergic reaction when I got home. Not fun. So I am scared. I have had a lot of the CNS issues too. I was wondering why my “migraines” would not go away but they also felt like my brain was in fire which has been sort of new the past year and a half or so. I also have the numbness and Neuro issues.
I hope the Rituxan can keep helping you! I hope we both don’t end up on Cytoxan. Has anyone on here ever had that? Was it as awful as it sounds?
Thanks again for the app info. I pray you get relief soon! -hugs
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 do get some swelling in my feet and hands, but it's very mild. As far as little brown spots, I have lots of them, but I think they're age spots - I'm 55 and my hands really show it :-) I do get reticularis livedo and sometimes my hands are sort of mottled reddish. I will definitely bring this up with the neurologist when I see him/her. Thanks so much for the info! Heymj
tinapet said:
Heymj,
Do you have any swelling anywhere like your feet, legs, hands? Redness or any spots you thought were Lupus? I had some on my arms and legs. Not too many only like five little ones. They started out reddish purple and now are kind of brown in color but I found out these spots are vasculitis NOT Lupus rash! I still get the butterfly rash on my face though. Just a few more clues that I learned this week. I hope you don't have it but none-the-less you need to let your doctor know so he/she can get the fluid off your nerves because it can damage them. Get well soon! Tina
good luck.