I have been on here for quite a while responding to your many posts, and all of a sudden I am blown away by a missed diagnosis. For years I am having lost sensations in fingers , toes, overall reduced feeling in my skin, inexplicable heat on my chest which was wiped away as being a menopausal symptom, weakened grip so I drop things, weakened back muscles, chronic plantar facciitis and last but no least inexplicable pain in my back for years when I try to lift my right leg. A few months ago the list grew longer with a so called tennis elbow that gave me excruciating pains and these pains caused numbness in my little and ring finger, as well as up to my shoulder whilst my right biceps melted as snow in the sun. Still no doctor looked at the overall picture of my condition being SLE combined with Sjögren and Raynauds. After a few futile visits and deteriorating condition heat on my arm to the point I could not sleep and no painkiller worked, 1 very young doctor decided to put me on amitriptyline ( anti depressives) which caused an averse reaction and made me very ill. I was sent to the reumathologist, who didn't even look at my arm when I questioned the supposedly Tennis elbow diagnosis, and argued that even SLE patients can develop all my symptoms independently. My blood tests were fine... My condition deteriorated further and I started falling loosing more and more control over my muscles and suffering of burning feelings, disorientation, inexplicable headaches , itching skin, heat on certain places and now I have been told my planned surgery for repairing a double prolapse is on hold. WHY... again 1 doctor has after 14 years linked all the symptoms... Periphery Neuropathy so far advanced the autonomic nerves are effected, causing the heat on my chest, the Periphere nerves on my arm are sending dying symptoms to my brain, and even the nerve from my spine causing the pain in my back and in my head is affected. It took them 15 years to listen to me, whilst I have fallen so many times, and injured myself to the point my right foot is deformed. I looked it up, didn't sound dramatic, however, the nerves to my organs are in such a bad state they find it necessary to cancel my surgery... My doctor now is very open, He dos not want to give m any hope. He speaks of maximum 50% pain relief, and is trying out all the drugs the NHS allows him to administer to me. He claims the functions I have lost I can't regain... Quite a lot, sight , hearing, sensation, all affected... There is more, but I think this gives quite a good picture how poorly I am at the moment, barely able to sleep despite the Nortriptyline. I sleep with cold-packs on my arm, chest and wherever I have heat on my body. cushions between my knees, under my shoulder, under my arm , under my feet whom feel like persistently burning in hell, wake up more than once a night to change the coldpacks... I am totally exhausted. I would like to hear of anyone of you who have equally been diagnosed with any form of neuropathy as a result of SLE or Sjögren. It is in advanced stage and considered POLY, but I am sure it is not the bare as it is progressing slowly since 15 years.
Does anyone have any exp and willing to extrapolate their treatment and knowlegde. No need to wrap things.
Thanks for reading this far
MORLOBACH
Written by
morlobach
To view profiles and participate in discussions please or .
I have had a lot of problems with my nervous system, including my brain. Has your rheumy tested you thoroughly for Hughes Syndrome/APS including secondary antibodies? A few years ago I was on the couch with pain running down my arms and legs. I got significant relief in my arms after 5 days on aspirin (a treatment for APS). Now I'm on anticoagulants and finding a lot of relief. Some of my symptoms have come and gone over the years, like foot drop, sensory problems, etc. Are you an plaquenil? Originally when I had neuro system, I improved greatly just from plaquenil. Also, has your doctor tried prednisone? I was never as bad as you are, although the months of nerve pain in all my limbs was unpleasant. A the moment, I feel so much better than in those days, although I still have sciatica in both legs at night.
Peripheral neuropathy in lupus really seems to stump doctors. Sorry you have gone so long without a diagnosis. A lot of these symptoms have been reversible for me. I hope your doctor is wrong and there is more hope than he expects.
Here is an article that was very revealing to me that I have posted before:
I was the firs years on Plaquenil but had to stop as it was causing sediemnt on my retina. I equally took for 5 years prednisobe but decided to get off steroids and only keep them for emergencies like inflammation in th brain or a vital organ. Now I use 400 mg Azathioprine, ( IMURAN) 200mg celecoxib cetirizine, nortriptyline, omeprazole, Vit D, Vit B12, Kolanticon gel. I was put on aspirine as my cardiolipins were through the roof but I started to have subcutane bleedings and fel genuinely unwell. Had to stop the aspirine. for pain I tried all common painkillers,including morphine and despite of having serious knock out effect I still felt the pain in my sleep and drowsiness. A frightening thought, as I only 2 years ago lost my mother and she was in excruciating pains but they gave more and more morphine. Now I wonder whether this has only helped the family by not seeing her suffer but not really helped my mother. According to my doctor, only nerves would not respond to morphine, but who can tell?
So sorry to read of your terrible peripheral neuropathy symptoms going undiagnosed and treated for so long!. Steroids can be good for the symptoms so don't dismiss them and I'm wondering if you've tried Gabapentin or Pregabalin it's new replacement?. I find Gabapentin gives me good relief, been taking it a few years now but I'm not as bad as you. Take Care. X
Good luck with Gabapentin. Hope GP told you to start on the lowest dose then after a few days increase it and then take it a few days and increase until you reach the dose that gives the pain relief without side effects. Fingers crossed for you. X
I have peripheral neuropathy have had it diagnosed since 2013 I am numb to varying degrees all over my reumatoligy St deputies this diagnosis made by a neuroligist who also diagnosed multiple sclerosis.
I am Presently seeing a different neuroligist regarding my health as one .
I take tramadol for pain lyrica for nerve pain spasms etc plus other drugs as well I don't
Am glad you're back. And am glad of your update. Although I wish none of this were happening for you
You've got some great replies. Am glad you posted your question
It all sounds v similar to my version of immune dysfunction & connective tissue disorder inc infant onset vascular SLE + early onset SS + early onset PID + vascular EDS
When did your symptoms first become chronic & so widespread?
Have you had your immunoglobulin levels tested? Am feeling my way into this, but IVIG infusions are given to treat this sort of thing in certain cases
For what it's worth: my version of this is relatively controlled by a combined therapy treatment plan of daily hydroxy + pred + myco + amitrip + antibiotics but the vascular & neuro aspect is clearly continuing to progress...although I like to imagine my meds are at least slowing progression somewhat....as you've been advised, I find that I never regain what I've lost re vascular & neuro function, re hearing & cognitive function etc...but at least pred gives me a bit more stamina & resilience so I can come with my disability + amitrip does help me sleep a bit more soundly
I have been 4 days on Gabapentin ( slow increase started with 100mg/day) in combination with Nortriptylene. So Far so good , minor side effects: extreme dry mouth and dry throat, difficulty swallowing, Diarrhoea and flatulence. Slight ringing in my left ear. Other than that it seems to be going well. I feel en improvement in the heat on my chest as well with the pain in my back, but my feet and arms are still the same. I am very tired but this has been the case for moths, and purely because I am so drained of the pain and often wake up from pain. Tomorrow I am increasing to 300mg/day. Should I ring the doctor to tell him of these side effects or is that too early? Doctor wrote on medication sheet: "If you are able to tolerate the side effects of this medication it works better when it has been taken for 4 to 6 weeks."
Am glad this seems to be going well...sorry, but I have no personal experience of gabapentin...but many on this forum do...if you feel up to it, maybe best to copy & paste this reply to me into a new post with a subject heading mentioning you need advice re gabapentin ?
I have been on gabapentin before and it did help with the pain. I gave it up because I gained a lot of weight and it didn't seem like I was going to stop gaining weight.
I also was going mention IVIG, since it had been mentioned to me by a GP. I know in the US it's difficult to get since it is so expensive.
There are other anticoagulants other than aspirin. If you had bleeding, on aspirin perhaps you would be do better on some thing else. I don't know, but it is something to discuss. If you have Hughes, you should be on an anticoagulant of some sort. In my case, it did help with the painful neuropathy.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Peculiar pain or normal?
The link between SLE and autism.
Free UCL virtual event about Sjögren and lupus
Newly duagnosis of SLE
Research project seeking individuals with SLE (aged 18+)
