LUPUS UK

Anyone get nerve pain?

I am not really sure its nerve pain, but it sure feels like it. Its not muscles. Can nerve's inflame too with lupus? I get these pains in my neck and shoulders, my head hurts - sort of like a headache, but more like someone is putting my head in a vice. Stinging feet...especially during a foot massage- almost kick the massager...Hands... I got a pain in my left thigh high when I started bike riding, and I was scared it was a clot in my artery that runs there. I was ok all day, so I guess it wasn't. Always get worried when I feel a shooting pain in my body. Its hard to know what it is sometimes. I remember my dad saying he had a lot of pain when he was getting older. I thought it was my mothers side that carried the lupus, but I am starting to think it is my fathers side. His mother was institutionalized because she tried to set herself on fire at the stove. I bet she did it by accident. I feel like I can't work my hands anymore. I have to move very slow. More and more I am getting convinced that lupus is a brain thing.

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Hello, I used to get dreadful nerve pain, especially in my feet and legs, the specialist called it neuropathy. I simply coundn't have anyone massage my feet due to the pain and walking was so hard. Pain all over, but more arthritic in nature. Often also got sharp pains everywhere. Lyrica helped me with the nerve pain, I could at least put my feet down then! also Plaquenil helped ease generalised pain if really bad, doc wanted me to be on steroids, although they helped with pain, I felt very depressed with the, but during flare ups, sometimes had to resort to them. Lupus is certainly not in your head, the pain can be managed with a good specialist. I hope you get it managed and wish you well xx

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Hi - as you probably know I'm diagnosed with RA rather than Lupus but I too suffer from nerve pain. Mine is in my feet, ankles and knees mostly although I will suddenly get it in my hands and wrists occasionally so I drop things that I'm holding with these incredible blasts of pain.

Like you I don't think mine is joint or muscle pain. My podiatrist told me that it seems to be in my nerves and thought it could be tarsal tunnel but he also said it could start higher up in my back or neck. No one has checked this out by MRI and I try and live with it but it makes me feel very slow and it wears me down so I know exactly what you mean. I feel it must be part of the inflammatory process because my ESR is high and I don't have much joint pain. Although I have to say that I would swap it for RA pain anyday! At least that is a known quantity. This always feels like a funny bone sickening type of pain. I seen to have a very multi system autoimmune type of RA though.

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I have had lups for 12 years now i have had an angioplasty performed on my right leg but i also have narrowing of artery on the right side of my neck,they won't operate unless it becomes necessary as it is dangerous.However i to get pain in neck and across shoulder but have been assured its nothing to do with arteries as i wouldn't get pain in neck.I get a lit of unexplained pain now i have APS as well as SLE I've learned what is just part and parcel of this disease and try not to stress as this is also bad for the condition.

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Hi yes you can have nerve pain ,I have been put on duloxtine for it ,it even hurts if I have a shower and the headaches are horrendous ,I have pins and needle type stabbing pain in hands and feet constantly and around my head the headaches come and go , this medication has made a significant difference and I now have relief from these symptoms I hope this helps , Chris x good luck

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I get terrible nerve pain from my spine it affects my arms , i take 900mg 3 times a day gagapentin also 15 mils morphine 3time a day it don't take all pain but helps x

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I've suffered for years with it. Now the only doc that listens is my Rheumy. The rest don't care or think I'm making it up, so very sad that medical professionals can be so ignorant. The feet pain drives me crazy, but like you, I have it all over too. Stay strong, keep seeing your Rheumy.

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I get this both sharp pains and an odd burning sensation on my skin outer arm and right side of face. The latter seems to correspond to when I am really not well....headaches from hell, burning toes and fingers and visual problems. The neck and shoulder problems and feeling like your head is in a vice I so relate to and dread. Im going to ask for a referal to see a pain specialist as I find this pain worse than the joint and muscles. I also get clumsy when I am like this and it is like my higher brain functions have taken a holiday.

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I get pain but I have found out that it's the sleeves of my muscles that get inflamed which in turn tightens around the muscles and gives me that burn like a chinese burn you used to give when your were kids ! They also Burn and sometimes I don't know where to put myself to get relief - I have Tramadol a really strong painkiller and that works for me

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Thank you everyone for sharing. I can tolerate the pain, but I get scared when I get it. It surprises me and I never know when to expect it. I am finally seeing a rhemy at end of July. Very busy doctor, so I am hoping he is good.

I have OA starting with a knot on the tip of my forefinger joint. Hurts sometimes and feels like my finger is going to break off, but tolerable again. And my feet are bad. Thank you again and I hope you all have a pain free day today.

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Lupus is lots of things apparently...

Yes it can really bug your muscles....(but for some reason my Rhumey said not your neck, or back)...

My feet have started a stupid burning thing too, but mostly my right.,.give it a few days my left will catch up too.

A lady in a super market I spoke to, had helped at an MS society, and for some reason a few lupus people came along to , to the group...I think she didn't believe me I had lupus, because she said this one lady it affected her brain the lupus, and she committed suicide. I tried to tell her lupus is different for everyone...

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Dgleds...I am sorry to hear that and she had no one to turn to. I think you are right...it's different for everyone.

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yup...mild to worse case scenario...mines like mild joint/muscle stuff so far, and tired.,.little things coming and going. Young girl I met about 17, was told she just had growing pains...had nose bleeds, the butterfly rash, feeling unwell etc...That went on for a while and gp kept brushing it off...One night she thought she was going to have a heart attack, and her Dad took her to emergency....she woke up days later in a foreign hospital, in a bigger city center...she had almost died! Lucky for her a very good lady Rhumetologist figured it out...There were no other family histories to check out for lupus, as she is adopted...She looks the picture of health now!!!! That was a worse case scenario...

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Hi natura, perhaps you don't have lupus. But i assure you. For people who do suffer it is very real. I have very sharp pain my arms like someone is cutting the tendons with a razor blade. Limited movement with arms, iam unable to dress my self sometimes, pain radiating down my arms to my fingers, down my shoulders and back. My life has severely been affected.

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faceit..I tested positive for lupus. Just on the low end fortunately. Sorry you are severely affected. I did not dismiss others pains. I don't know what I said that got you defensive about telling me that I don't have lupus?

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I had awful leg it felt like I had blocks of wood rather that legs most times it felt the "wood" was on fire. My rheumy sent me for nerve test and was diagnosed with nerve damage I take Neurontin it keeps the sensation and burning at bay. I ask my rheumy if the lupus had caused it he just said it was hard to tell. At the time I was on 400mg of plaquenil since then 100mg of Imuran has been added to the mix.

Just getting back to what dgleds said my now daughter in law had just started dating my son at the time of my dx and she told him I couldn't have lupus because one of the kids she teaches their mother had lupus and she was very ill and died and that I looked very well.

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I have had nerve pain for over twenty years ots horriable ..and because know one can see it they dont how painful it is .hope things improve and u feel better orshould i say manage it better.x

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Hi natura sorry if I misunderstood you. I guess it was the last sentencewhere you said you're starting to think lupus is just a brain thing.what does that mean? A brain thing I did not mean to offend you.

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I meant what dgleds said. The brain fog. Why I couldn't figure out how to get home from visiting my brother. I wasn't familiar with the area, but upset that I couldn't process what way to go even when my husband said to not go that way. He didn't say it loud enough to me I guess. People have told me that I have good tuning out skills. How I survived young children and growing up in a household of 12 siblings. I was very confused. That is what I meant about brain thing. Sorry I didn't clarify. After I read what I wrote again, I realized it sounded like I meant it was in our imagination. I did not mean that at all.

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Quote : More and more I am getting convinced that lupus is a brain thing.

Maybe Natura means it can involve your brain as well. It sure can give you brain fog! I think others can have more brain involvement in a bigger way too...

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Hi Natura,

I'm sorry to hear about your pains but yes I also get the same hence why I'm on nortriptyline as it's used to help nerve pain which I suffer with. I was trying to re-read your post but do you have fibromyalgia? Do you also find that when people touch you, you cry out in pain? Sorry for all the questions but you sound like me!!!! Do you find wearing clothes painful? Or even the weight of your duvet/covers painful too? I have pains in my legs this morning as if someone was running a piece of foil over my fillings. It's going to be a long day! I really hope things are resolved quickly for you. Let me know how you're doing when you have time. XXxX

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kitkat....I might have fibro. That is what I thought I had years ago when the troubles started. I never went to a specialist. I am finally going to a rheumatologist in July. I don' t cry out when touched from pain. I am most comfortable in cotton and not tight on me. I have extreme sensitivity to pain though when I hurt myself, but sometimes feel I have some neuropathy going on too. Hard to believe you can have both. I am sorry for your leg pain this morning....feel better.

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Hi Natura. I do get nerve pains as part of a flare up. I get different types: sharp pains that take your breath away in my side and left arm and various fingers/toes, burning pains on large areas of my arms and legs (sort of feels like a burn to the skin and sometimes manifests are 'cold' sensations too) and tingling prickling sensations (like nettle rash) which is called 'small fibre neuropathy'. I decided not to get it checked out by the neurologist because it isn't really severe and it comes and goes and moves around so much that it would be impossible to medicate.

I find the brain fog increases too with a flare. I can feel drunk and unsteady on my feet, and mentally slow, hard to find the right words. Thankfully, it's not been so bad as that recently! The week before my period is when I'm much more likely to get these symptoms.

I hope your flare passes soon and you are blessed with some remission x

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Dryad...thanks....it's not severe with me either. I just get upset with myself when I am disoriented. Depression seems to come right after. I guess it's always a surprise when the pain shoots through somewhere in your body. You think I would be use to it by now and accept it. I am only 4 months diagnosed and have to adjust to still. Wish I could be more understanding and patient with myself. I know I am hard on myself. Just don't know how to deal sometimes.

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Don't worry, it took me 2 years to stop fretting about my diagnosis! It's such a huge life changing thing to adjust to and it takes time. I felt like I was going mad and I got depressed too due to all the new and scary symptoms. But over time it does become less frightening and I've learned to be more patient with myself too. Take care of yourself x

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Thanks..you too!

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Hi, I have suffered from neuropathic pain from time to time especially after bouts of shingles, I have had it so bad that I have been hospitalised sometimes, it has often been treated with Imipramine. The docs try to keep the dose quite low as this medication is actually an antidepressant that has been found to work on this kind of pain. I have founf that it was useful for me, I attend a pain clinic where they tend to look at medications other than just regular pain medications. If you have not already got a referal to a pain clinic I suggest you get one as at these clinics they have access to all sorts of other forms of pain relief and the doctors will recognise lots of different sorts of pain.

Good luck and all the best finding pain relief

Madmagz x

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Oh now i understand

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Yep, unfortunately I've had many of these. My latest convo with my Rheummy about it really shed some light on the issue. Oftentimes you have a combination of a mechanical problem that combines with an autoimmune problem which makes nerve involvement so much more painful. For me it's my hip, SI joint, knees and feet. I know it's nerve usually because the pain travels (I can feel it moving down my leg) or when the pain is super "hot" and acute. Unfortunately, these are all areas that are worn down by lupus and other autoimmune areas. His advice was to make sure the muscles surrounding any area you feel nerve pain in are both soft and strong. Soft so that they aren't pressing tight against a nerve and strong so that your skeleton is being held in place.

When mine gets out of control (along with the other pain), I run to the nearest pool and get in for a few hours. I do some PT and walk in the water. Sometimes just float and gently let the water move my spine around. At the very least, most of the pain just disappears for a few hours. I manage my pain on a hour-to-hour basis, so a natural solution like pool therapy is always welcome.

However, if your problems persist, wouldn't hurt to get an MRI to make sure you don't have a compacted nerve somewhere.

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Thank you Katidid for responding. I did seem to get the nerve pain under control for awhile through diet. However, I had to reincorporate grains because my intestines were not working well, and the nerve pain is back. In fact, it kept me up all last night from my left knee to my calf. Very uncomfortable. I have found that a heating pad on it helps a lot. So, I had to get out of bed and sit in my living room with a pad. It helped relieve it enough for me to doze off. Although, my neck is uncomfortable in this position and gives me other problems.

Swimming is a great idea. I don't have a pool in my gym though. I did get to exercise in my pool in my yard this summer a little. I think my pain was less.

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I forgot to mention that I also see a Neurologist for pain (nerve and otherwise). One thing that can happen over time is one set of aggravated nerves “trains” your brain and other nerves to perceive pain as greater than it is AND refer pain to other areas. It’s complex stuff but she and my pain doc are the ones that support activities and treatments that “dial down” nerve communication. That’s where the pool came in for me. I did assisted Water therapy for about 9 months then I just started going on my own. Swimming is good, but I swear by floating or simply being buoyant. It turns the nerves down.

Also, like you I found my burning stinging feet were effected by food. Small, low carb meals at night made it better. Too much food in general or sugar makes it worse. I still sleep with ice packs in my bed tho. When it’s bad, I rest my feet on them.

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Wow...interesting about the brain and feeling of pain. I have been very confused as to why the pain moves. Dial down nerve communication? Wow, i need to read more. I found the heating pad helped a lot. I can see ice working too, but dont like the idea. Lol. Thank you for sharing this information.

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Yeah, seems to vary person to person when it comes to temp. Heat makes my joints (and tendons) SCREAM, whereas ice helps the pain but also provides a distraction. My muscles in my upper back like heat tho, so sometimes i look ridiculous half covered in heat and half packed in ice. My husband and I have learned that you have to laugh at the silliness of it. I'm not sure if you have other joint pain, but I have also found that joint w/nerve pain is helped by compression. I compress my knees at night and sometimes use an SI compression brace when my lower back and leg nerve pain are driving me nuts. I have a cross over condition Lupus + Psoriatic Arthritis, so I have to always look for ways to support the soft tissues surrounding major nerves.

For you, defintely get a neuro consult or a pain management consult with someone who knows neurology. There a lot of non-pain killer options out there, especially if you have true neuropathic pain (which usually first shows up as that feeling you describe in your feet). Some of them are very effective and work well with natural and lifestyle changes.

Best of luck and DM anytime if you need any more info!

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