Neck pain and heavy arms

[lennox]

My neck is throbbing and hurts when I move it, and even my arms feel heavy and achy has anyone else had this ? I have been taking pain killers but don't seem to help and I feel shattered, I have even had hot bean bags on it and that's not helped just feels like it getting worse any one recommend anything

[Jo883]

Hi Lennox

Yes I suffer quite badly with my neck. I do have cervical spondylosis. When I flare my neck becomes really aggravated and is usually indicative of quite a bad flare for me. It also affects my arms, weakness, loss of strength, pins and needles. I have regularly seen an osteopath for 6 and a half years . So I have done everything to help myself. I have been suffering with quite a few neuro symptoms too and I'm not waiting to see a neurologist at St Thomas. I've been put on Neurontin/gabbapentin to help these symptoms and that with other combinations of meds has helped but it has almost taken 2 years to get to this point. Regular pain killers don't tend to help this kind of pain in my opinion. I would see if you could talk yr Dr into having a scan to see what's what. I don't have the answers but do feel my neck problems cause neuro problems, but also flares aggravate my neck - I think this happens because my joints swell including my neck. Well wishes x

[lennox in reply to Jo883]

Thank you for replying I am under a Nuro doc at st toms as I have a nerv sheaf tumour. And I have had this feeling in my neck for some time and mention it to my lupus doc but never seem to get anywhere it's making me feel really down in the dumps just feel like crying today I have gabapentin for my back but felt like I was not in control of myself maybe I didn't take them long enough and should just put up with the feeling it makes me feel, I'm so scared of taking different drugs as I already take so many, but I feel so weak from my neck down to my hands strange feeling, I have had a head ache for about a week now just a heavy head and today it's hit my neck and arms maybe I should go see my gp just to make sure all is ok, hope u feel better bloody lupus

[Jo883 in reply to lennox]

Lennox - it's really hard, I can really empathise, as I don't think I have met anyone serious enough to take me on and find out what is wrong with me as yet. Neurologists scare me a bit. I have to say when I first started on Gabbapentin - I really did not feel like me, I would go as far as to say it made me feel exceptionally low, depressed and I slept and slept, Like a slug! I almost gave up on it. Because my neuro symptoms flare with my flares and my flares weren't kept under control - I had the drug upped again and went through the same symptoms, this was prescribed to me by neurologist. There are a lot of people here that swear by pregabalin/lyrica supposed to be a more expensive, possibly better version of neurontin so it may be worth a try. I'm also on 2 x 200 hydroxy and 12.5mg steroids 600g neurontin per day, I'm not too happy about it either but have been in a flare for 2 years - and the neuro symptoms progressed to the point where I ended up on the stroke ward in April - my scan was clear but I lost feeling in whole left side of body,(still have residual weakness on left side) left side of my face had dropped, slurred speech, couldn't understand what people were saying to me - I was housebound for 4 months couldn't walk without collapsing, couldn't drive, couldn't tolerate noise/lights, couldn't do much at all - I'm still waiting for answers - I understand what yr saying about the weakness - I get shaky hands, I'm clumsy drop things, also get funny tremors and visual migraines/disturbances. I have not heard of nerve sheaf tumour - i shall look it up. Please could you tell me what neuro u saw at St thoms, I'm on a waiting list and would appreciate your verdict. I just want to say, maybe see yr Dr and ask to try pregabalin this time if you think gabbapentin wasn't right for you, I know how you feel but without the meds I'm on I wld be housebound, with real problems unable to drive or take care of my family. My philosophy is you play the hand your dealt, no matter how much it really does suck. But u have to keep on fighting at the same time to make sure your seeing the right Drs/Consultants and taking the right meds to help you, not getting passed off bcos no one knows what to do with us!! It's been a long journey of fobbing off for me so far, but with age comes a grumpy determination to find the right person that is willing to help me (being treated with a touch of humility would also be nice as well!) but I won't hold my breath for that!! I'm here if you need to chat!! You know in yr heart if something isn't right so trust yr instinct and get back to ur Dr/consultant - I started on 1 x 100g tablet of gab per day for 3 weeks so I could get used to drug and tolerate it after 3 weeks went up to 3 - 3 x daily and now 600mg it took awhile but it has helped. All my very best J xx

[lennox in reply to Jo883]

Hi I have seen 2 Nuro doctors at guys and at toms I see a doctor called guy at the moment I will get my letters out and wrote the name down for u, have to be tomorrow now, it's just gets me down cause it makes me feel drunk when it's really bad I can't drive and I don't go out by myself when I'm like that so know that feeling maybe I will start the tablets again, there not 100% what sort of tumour I have as they tell me I'm a complicated case and will monitor me with MRI scans and if it frowns then I will need surgery but at the moment it it's stopped growing , I see the Nuro doc every 6 months, really is a lovely doc but this neck thing is doing me in

[Jo883 in reply to lennox]

I hear you, I can only say to you that I used to lay there in so much pain I didn't know where to put myself, I felt if I was a dog I would of been put down, the neck pain was just the worst, pain meds did nothing but with a bit of perseverance the neurontin has started to help me it has decreased pain and with other drugs I'm now flaring only around my monthly cycle, I'm also managing a better day, from day to day I'm firing on 75% atm and from 0 that's a bloody good improvement. I've been through every emotion you could possibly imagine. Just please don't stop looking for answers/meds because once ur symptoms improve so will everything else. Keep a good grip on your fight, it's hard I know and only others who suffer can understand. I appreciate u finding out who your Neuro Dr is it helps as I have to really psyche myself up to not take any crap, to be polite but assertive etc. I never thought I'd get back to where I am now, so take hope from that. Sending gentle hugs x

[jom277 in reply to lennox]

I have been on Pregabalin For 12 months now and on the whole has been amazing and if they put me on other medication will make sure I keep these. I have pain in neck, shoulders and right hand side.

I will say though, I went through two weeks of hell when I first started it. I felt drunk, disorienated, sick, etc.

It takes a couple of months to really kick in and I presume this will be the same for Gabapentin.