Lupus and nerve damage.

[svfarmer]

Good afternoon everyone hope everyone is having an ok Monday - am feeling utterly fed up , went to doctors today with stabbing burning pains in my toes which has been ongoing for last few months but couldn’t ignore anymore anyhow doctor says I have nerve damage and have to see a Neurologist ASAP and said did your rhemy consultant not tell you that you may get nerve damage with Lupus - no one has every mentioned this to me - keep thinking what next- I also have RA and connective tissue .

[Hidden]

svfarmer, there is so much to know with Lupus and CTD. I’m sure there is a lot your doctor hasn’t told you. Possible because he/she figures you’d cross that bridge when you come to it? Maybe didn’t want to load your head with a lot of info and scare you?

I would keep a file. Get copies of all your doctor’s notes, lab tests, etc. I also keep a photo journal on my phone of all the rashes, swellings, etc. Be as proactive as possible. Read, investigate. Write down questions you will want to ask. It may feel overwhelming at first, and, it will take a lot of your time and thought process, but that’s ok, you are going through a life changing event. But, I promise you if you keep a positive attitude, the puzzle pieces will start getting easier to put together and in time, you will feel less overwhelmed and consumed with this. It is a life changing illness, but it solely means adjusting, not giving up and into it. You’ve got this! And we’ve got your back!!

I recently read someone’s comment in here that said that dealing with this is a full time job. Well said!

My best to you. Don’t forget to ask your doctor. Ask, ask, ask! If they won’t answer, find a new doctor. 🙏

[svfarmer in reply to Hidden]

Thankyou so much for the reply - usually I am very positive outlook but guess it just shocked me abit today with the nerve damage and like you say feeling bit overwhelmed by it all - I will follow your suggestions Thankyou x

[Hidden in reply to svfarmer]

All my best🙏

[Chanpreet_Walia LUPUS UK]

Hi svfarmer,

I am sorry to hear you've been experiencing such pain, I do hope you are able to see a neurologist as soon as possible to help with your symptoms.

According to The Lupus Encyclopedia, nerve damage in people with lupus can be caused by peripheral neuropathy. Peripheral neuropathy is a common nerve problem due to damage of small nerves of the legs and arms. It common causes gradual onset of decreased sensation in the feet sometimes follow by similar problems in the hands. Sometimes the person will notice a burning sensation or “pins and needles” as a result of this.

A tingling sensation in both the feet and hands can be caused by a few different factors.

One could be due to Raynaud’s phenomenon, this can cause extremities to sometimes change colour, become painful and cause the person to experience a ‘tingling’ sensation.

lupusuk.org.uk/coping-with-...

The other could be due to Polyneuropathy. Polyneuropathy typically affects the nerves that are responsible for sensation and feeling things. Damage to these nerves can cause numbness and tingling of the feet more commonly than the hands. To learn more about lupus and the feet, click here lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.

[svfarmer in reply to Chanpreet_Walia]

Thankyou so much the fact sheets were very helpful x

[Shellys22]

Its neuropathy nerve damage theres not much they can give u apart from pills av the same just becareful with your feet

[Babs511]

I actually saw my rheumatologist last Thursday and have been diagnosed with neuropathy. It has affected my feet badly. Also my finger tips. Both tingle, burn and go numb. I didn’t realise this was common with lupus so another find out as you go. I keep a photographic diary and this really helps. I saw other dermatologists at my appointment so it was incredibly helpful for them to see the extent of my symptoms.

[svfarmer in reply to Babs511]

Thankyou for the reply it’s nice to know I’m not the only one x

[Babs511 in reply to svfarmer]

Unfortunately your not . But also seek comfort in your not in this on your own. Sometimes these symptoms make you feel like what else now ! But there are thankfully some great supportive groups , like this one. Take good care. X

[Sfigata]

nobody ever told me about nerve damage either. For months I have a burning sensation on my neck. could this be nerve damage too?

[svfarmer in reply to Sfigata]

Not sure think you need to go and see your GP - good luck and best wishes x

[Tiggywoos]

Hi svfarmer hope you don’t mind me jumping on this old post 😊 . I have Same in my calves but not in toes I had an MRI last week of spine as neurologist feels I could have damage autonomic nerves which I understand is different to peripheral nerves . I don’t get pain in my toes but pain in calves (they are also sensitive to temperature ) were your toes ??

Did you manage to get to the bottom of your problem? I’m taking amitripline and it does help a bit .

Really hope you’re having a good day 🎄🎄

Thank you 🙏

[svfarmer in reply to Tiggywoos]

Not at all - I had nerve tests done which were really painful - they said my wiring is ok but think I have nerve damage from where I slipped a disc in my back about 23 years ago - so am waiting for a scan of my back now - they are not sensitive to temperature- it literally feels like someone is stabbing my toes with a knife I too take Amitriptyline for insomnia but dosnt help with the pain - how are you getting on ? Xx

[Tiggywoos]

Oh my goodness amazing how something that long ago can rear it’s head again 🙄. So sorry to hear it’s so painful . I started on 10 mg amitrip and worked for a bit . Neurologist said Gp should have told you you need to keep upping it until you find it works 100 percent . I’ve gone to 20mg , again worked for a bit then few nights later not so good . They do throb and drive me insane 🤨 . Have you found anything to help the toes ? Xx So kind of you to reply ! Helps so much not to feel alone !

[svfarmer in reply to Tiggywoos]

Yes I know I couldn’t believe a back Injury would rear it’s ugly head after all this time. I’m on 100mg Amitriptyline so quite a high dose but I tolerate it well, it’s the only thing that makes me sleep 💤 as have chronic insomnia for 35 years 😬

Sadly I’ve found that nothing helps with the stabbing pains in my toes- sometimes it wakes me up it’s so bad but I can go for periods where I don’t get any pain at all. I really hope the Amitriptyline works for you as I know it does help a lot of people with pain issues. Hope you have a very lovely Christmas 🎄❤️

[Tiggywoos in reply to svfarmer]

Blimey 100mg sounds like a lot but I have read about people taking more . I guess it’s all about what the body can tolerate . If anything exciting comes out of the MRI I’ll pop a post on . Thank you for sharing 😊. Have a lovely peaceful Christmas 🎄 and stay safe xx

Ps the body is an amazing thing isn’t it . Even when it lets us down it’s still fascinating