I have SLE, Hughes Sydrome and Sjogrens Syndrome and now have nerve damage where my C6 & C7 vertebrae are compressing the nerves, causing severe pain across one shoulder and down the arm into my hand
Today, my rheumatologist decided to put me on Amitriptylene with Co-Codamol for this pain and discontinue Tramadol. Has anyone else had similar treatment and if so, how successful was it? Many thanks for any help or advice you can give.
Apologies that my reply won't be strictly relevnt to your ?, but perhaps my experience could be somehat helpful. I'm v aware I only know the bare details of your condition, so I'm sorry if what I'm going on to post isn't really relevant to your version of spine probs....which of course tend to be notoriously individualistic and complex.
I'm globally hypermobile and arachnodactyly, with sicca symptoms/sjogrens. A bad childhood accident (fall on head from a height) had set me up for severe spondylosis, which was aggravated by my career choices (horticulture) & hobbies (mt walking, gardening). My cervical nerve problems are slightly higher up than yours:: C4,5,6 and although i do have spinal osteophytic growth, i don't have major nerve or sinal cord compression, but do have facet joint nerve compression bilaterally. My pain consultant had me on clonazepam & in the '90s-2000s, which he felt was more appropriate for someone hypersensitive (at the time my lifelong SLE hadn't been re diagnosed so he was sort of working partially blind folded)
That Rx was more effective than the NSAIDs & codeine pain killers my GP had me taking for years in the '90s. But because I had spent years reorienting my posture (Alexander technique since 1980s) and my pain consultant did a series of bilateral cervical facet joint denervation ops in the 'late '90s-early 2000s,, we managed to substantially reduce my neck/shoulder/arm/hand pain/pinsnneedles/numbness etc and nerve firing via literally numbing the problematic facet joints. Meditation, daily sessions lying flat and a sensitive daily special bespoke exercise routine gradually undid much of the chronic repetitive strain due to my career & hobbies, but even so I did have to semi retire early and learn to strictly ration activity & pace myself + get into the whole anti inflammation diet/supplements thing.
But my SLE rediagnosis in 2010 and treatment with 400mg daily plaquenil then, to my rheumy's surprise, cleared up all lingering hand/arm/shoulder/neck-pain...the sort of pain I'd thought of as spine nerve related, but which we now think was SLE creating its own version of spine/shoulder pain: as if my version of SLE was in some way attracted to being active in the more vulnerable/injured parts of my spine. This has also happened in my lumbar/sacral spine as has Amitriptyline (20mg nightly) for general pelvic girdle pain/endometriosis (you probably know that quite often lower spine trouble follows on the heels of upper spine trouble. I've also had successful numbing from denervations ops down there too, and treatment with hydroxy has also surprisingly helped there, but the amitriptyline + low dose pred tapers have helped me minimise any unresolved lower spine pain....although I do have to consciously maintain my pacing regime & anti inflammation diet etc)
Hope something in all that is of some use to you. Am v much feeling for you
I have SLE and Sjogrens Syndrome and also have nerve damage, C6 & C7 vertebrae compressing the nerves and severe pain across left shoulder and down the arm with impressive pins and needles. Amitriptylene and Co-cocadamol didn't touch the pain so I was given Naproxen and Gabapentin which has worked for me. Have had to up my Omeprazole to protect my stomach but so far OK. However, Amitriptylene does work really well for some people so fingers crossed for you x
Hi there I have SLE was diagnosed 2010. I have been on Amitriptyline since and it really does help with my neuropathic pains.I suffered terrible nerve damaged from the lupus attack.
I normally take it at nights as it make me really drowsy during the days and I have to work.For me this drug really works.Dexopin is another one to try, I found Tramadol did not do much for me.Anyway take care
hi rockhoper i have problems with my c spine similar to yourselve with severe headache,s aswell they have me ontramadol and sodiam valporate had amatrypoline previous but higher dose, was giving me a very very dry mouth
I had a spine opp. two years ago and have had two 8" Titanium Rods and nuts and bolts up my spine as it had twisted so bad they thought it might sever my spinal chord.
I was on Amitriptaline, co-codimol and Tramadol, the only side effect was constipation.
now they have swapped the co-codimol to Orimorph (morphine) as when I lay down a nerve is trapped by the 'Scaffolding' in my spine - bit of a bugger really and I am still learning to walk. There are no side effects from the medication, just the opp. xx
Hi there. I have similar symptoms and had a C5/6 discectomy about five years ago which dealt with the arm pain very well. I've been on Amitrip, Tramadol, Co-Codamol and more recently Morphine for years now and the only side effects are dry mouth, a bit of fuzziness in the morning and constipation.
Hi Rockhopper. I tried amitriptyline and co- codomol but the co-codomol made me feel very sick and the amitriptyline had no effect on my pain. I've tried gabapentin but that made me spaced out so now on pregablin. Helps the pain a bit but still very painful. I had x-rays taken last week and something has shown up so got to go to hospital on Tuesday. They've put my lower back pain down to Lupus without really doing any tests and this made me worry, just because I have Lupus doesn't mean that my back pain is automatically caused by it so I asked for further tests. I'm hoping that something has shown up on the xrays that may be 'fixable'. I have three disc that have eroded in my neck also and one of the discs is pressing on a nerve causing a tremor, pain and pins and needles in my right arm. I've been having acupuncture and find it a great pain reliever and no side effects. Love and hugs xxxxxxxxxxxxxxx
Hi ! About 20 years ago a good acupuncturist told me that acupunct. would not help
nerve-ending pain and instead I should try Amitryptiline : a regular, nightly dose of one
between 12.5 mg & 25 mg, (EVERY night, even when pain level is low), then, when flare-
ups get unbearable, increase that dose to maximum 75 mg. More than 75 mg won't do
any more for pain, but 50 mg isn't always enough (for me). For me any amount up to 50 mg takes up to 2 hours to work, so swallow the bedtime dose about 9 pm. Better to lose some evening than a whole morning. The 75 mg dose kicks in after about 45 mins.
Amitript.'s side effects : Higher dose = stupid + forgetful the next morning. I boiled the kettle without filling it. I locked myself out. I lost my purse in the house so was late for hospital appointment. Work very slow & difficult until midday. Morning driving out of the question. Dry mouth I can live with -- I think I've adapted, (only the 75 mg dose makes the mouth dry) . Constipation I cure with Diet (spinach, brown flour, red kidney beans, etc).
Warning : NEVER stop Amitrip. suddenly. From 75 mg, gradually lower the dose, e.g. take 50 mg for 5 nights, then 40 for 5 nights, + so on. You'll not sleep if it's suddenly stopped.
About 12 years ago, my pain attacks became more agonising & more frequent. A neurologist recommended continuing the Amitrip. nightly, but during flare ups adding
Co-codamol 30 / 500. This really knocks you out so you sleep unaware of the pain.
Warning ! You can also sleep through the alarm clock -- not exactly deaf to it, but so
blissfully sleepy & mostly pain free that you turn it off, promise yourself a wee snooze --
then wake up 3 hours later . . .
DANGER : Write down the exact times you take Co-Codam. as you can't trust your memory & it could be easy to overdose accidentally, especially in the middle of the night,
when you're brain-fuzzy anyway. The instructions in the box are clear on the timing.
I've lived with this regime for 12 years but would prefer one that didn't knock me out most of morning. "Tramadol", I'm told, works for 50% of victims & has no effect on the other 50 %. It can also have the same morning effects as Amitriptilyne, so I haven't bothered to try it. Yet. Good Luck
Hi paigie. I have to say the acupuncture has worked well for me, although I have to have it done weekly. I like it because there's no side effects because I don't do well with meds. My neck muscles go into spasms and Ive taken Diazapam for it but last week the acupuncturist did my neck because it was in spasm and it worked wonders. I just think that its worth a try because you've got nothing to lose. I have mine done by an NHS physiotherapist.
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