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gkf109
07-13-2011, 04:45 AM
I have been having pain in my neck and shoulders, It seems to get better, than it gets worse, not sure what's going on, just wondering if anyone else gets this? It has been this way for a couple weeks now, seems to be worse in the morning and night.

steve.b
07-13-2011, 05:21 AM
gary,
for me it is inflamed muscles.
the sore shoulder and back can best be explained as
"your muscles are sore when they are pushed on.
they push back, moving the lungs backwards, causing the pain."

hopefully this makes sense.

lovedbyHim
07-13-2011, 05:32 AM
I am sitting in my office right now with this (Grin). I was recently diagnosed with fibromyalgia on top of the SLE. I guess this is common. Here is how I am learning to deal with the spasms and nerve pain. I stretch every morning noon and night. I love heat of it. I used large does of ibuprophin and cymbalta to manage it. I am backing off muscle relaxers and I pushed to hard yesterday. Today my muscles are not happy. When it gets real bad I cant stand my boyfriend to touch the back of my arms and hug me. It makes me jump out of my skin. Hope this helps.

gkf109
07-13-2011, 05:39 AM
Thanks steve, I am trying to get into the doctor today, it hurts just to move my neck a little, I did do a 24 hour urine test last week, and the only thing it showed was elevated protein doc told me to stay out in the sun for a couple of days and get more bloodwork as my ana is still negative, my rash came back about a month and half ago but it went away a couple of days ago or most of it anyway, it never does really go away, starting to get sores in my mouth and my nose sores are coming back now, joints are really stiff last couple of days and am feeling really tired, can only take tylenol, because i take medication for a heart attack i had in sept

Manderson
07-13-2011, 07:34 AM
So far the only parts of my body that don't hurt are the neck and shoulders. What sort of rash are you talking about - the butterfly? Last night I had such burning in my joints that I could not get comfortable enough to sleep. So like you, nighttime seems to be worse so far. Early AM's are very stiff which is why I wonder if I have RA as well. When I get to work, I don't seem to notice as much.

debbie-b
07-13-2011, 07:53 AM
I also have neck pain, every day, some days more and some less.
When my neck hurts very bad, my shoulders also start hurting. I also have fibro, which gives me a different kind of pain, right on, above and right below, the shoulder blade.
My rheumy thinks the neck problems are from RA, but has not send me for an X-Ray yet.
I am happy to say, that the MTX is finally starting to work for me and the pain is somewhat less.

Debbie

gkf109
07-13-2011, 08:56 AM
Hello, My rash is red and blotchy, I get it around my temples, my forehead and the sides of my neck, when it comes it lasts for weeks to months, my derm did a biopsy and told me it was tumid lupus and it would only affect my skin, but I have all the symptoms of SLE, but the 3 times they have checked my blood my ANA is neg, I also went to a rhem and she sent me for x-rays of all my joints and she said I have arthritis in all my joints, I also get sores in my nose and now I am starting to get them in my mouth, my doctors are trying to figure it out, most of these things have affected me my whole life but I had no idea all these things could be related to one thing, but when the rash showed up for the first time about a year and half ago it was the red flag. Thanks- Gary

Peridot20_Gem
07-13-2011, 11:32 AM
Hi Gary,

I suffer with my neck and back besides shoulders but i have spondalitis from birth and it sounds like you could be having the same problems if they reckon you have Arhtritis, the pain spreads mate..mine goes into my head at times and that is bad then but ask your doctor also to check you out for any trapped nerves as i had that years ago and had to have 2 jabs in my shoulders to kill the nerves...it's worth checking out besides as that does throw some pain off besides.

Gary as you know we're not doctor's but ANA's don't have to come back positive to show you may have an Autoimmune disease because the nose sores and mouth trouble alot of us suffer, i'm just lucky at the moment nothing as gone to my mouth.

Terry

gkf109
07-13-2011, 01:13 PM
Hi Terry, I just got back from my doctor for the neck pain, he did some x-rays of my back, and it showed 2 big spurs, and some joint deterioration and a little arthritis, I asked if lupus could cause this and he said it could, I think he starting to realize its lupus, It would be nice to get a diagnosis, dont get me wrong I dont want to have lupus, I just want to get some treatment for the symptoms, I know lupus affects everyone differently some worse than others, but mine is getting worse! Its hard to deal with I am only 42 years old i am married and have 2 kids who dont understand why dad doesn't feel good all time, I am pretty sure by what I now know about lupus that I have had it all my life, don't know for sure if I have ever felt well, when I was 19 I was diagnosed with hodgkins disease and went through almost 2 years of chemotherapy that made me very ill, last sept I had a heart attack and had to have 3 stents put in and I have to take plavix, lipitor, attenlol, aspirin, so I cannot take nsaids for pain only tylenol and it does not help, and over the last couple of years the lupus has gotten alot worse, and more frequent, I also take restasis for dry eyes,Ok I'll stop rambling now, anyway hope your feeling good-Gary

Peridot20_Gem
07-13-2011, 04:49 PM
Hi Gary,

I always find it's better when your with a doctor or specialist who will do their best to confirm things and get issues sorted out because like you said you just want it treating.
I'm your age mate and in the last 2yrs alone the pain as gone nuts with me, so i know what your going through and as soon as you wake of a morning you never know what you'll be presented with during that day.

Gary you ah rambling mate and it's alot better than holding it in because if you stress out..lupus loves it and thrieves on it, when i was put under a rheumo he did the tests had my background epilepsy, strokes, DVT etc told me i was born with it and all those symptoms Lupus had caused and it's like the lupus is having a good old field day now with the SLE, as i've got a Tumour on my liver now got to be sorted out.

I am sorry to hear what you've gone through and having to kids, it's bloody terrible at times.

Gary i'm adding this link for you to read mate on spurs and joint deterioration.

www.laserspineinstitute.com › Spine Conditions (Type in search neck deterioration and click on the top one on the next page)

All the best mate and keep we updated please. Terry x

wrightrs
07-13-2011, 05:50 PM
Neck and shoulder pain is part of the symptoms I was having before they found my lupus. They thought I had meningitis . They where going to stick a needle in my spine to test me for meningitis. So glad they didn't. I still get the Neck and Shoulder pain now, when I flare.

lovedbyHim
07-14-2011, 03:49 AM
Wow Gary you have been through a lot. I sure hope the doc can relieve your pain and spasms soon

Peridot20_Gem
07-14-2011, 04:08 PM
Hi Gary,

Hows today been for you mate...i'm just hoping it's been a little bit better as there's nothing worse than niggling pain constant.

Terry

gkf109
07-14-2011, 04:59 PM
Hi Terry, How are you? My neck is still really sore or I should say my upper back, I didn't think lupus affected your spine,I'm not sure what's going on, all my joints are sore, and i have a sore in my nose,and I am very tired, My rash came back about 2 months ago, but went away about a week ago, my left leg is numb and been that way for months, and I have had alot of weird sesations all over my body for a couple of months now, I have had them all my life but in the 2 or 3 years ever since I first got the rash, all these things that have been happening to me forever are more frequent, much worse and lasting longer, I am kinda glad the rash showed up because if it didn't i would never have known anything was wrong with me, been this way for so long I thought it was just "normal". anyway hope you are having a good day and take care -Gary

Peridot20_Gem
07-14-2011, 05:17 PM
Hi Gary,

I'm the usual mate been getting more legs spasms the last 2 days and my calfs swelled bad today well that comes off the Scleroderma and then out the blue this afternoon my liver kicked off, well i've been on the water today to help my organs and i bloody hate the stuff as i'm a tea lover.lol

Your neck can be like that for a while i get it in my neck but lately it's hitting the left side and shoots pain into my head and yes it can affect your back and give you some right pain mate...can i suggest something if you don't mind and if they've not already done it, push for a full MRI over your body and that shows up alot more than x-rays on what's going on.
I've been commenting on a thread about sores up the nose, it's manderson's thread, i've got them regular and my left nostril feels like it's being slowly eaten away,the sores come then dry crusty and come out in bits when blowing my nose then they leave me feeling like my nose is running badly and when i blow it nothing there.
Gary with what your going through the aching, is pain moving from one area to another and i will admit even myself now find it hard to handle and you can't explain it to people who don't suffer it because they'd think christ you look healthy enough, we're actually mate silent suffers of a Disease that can rouine you unless it's controlled by drugs.

Gary my day ah been tobad mate it's 01:16am here in the uk.lol but you just takecare. Terry

scubagramplit
07-17-2011, 08:28 AM
I get the neck and shoulder pain very bad also and I see a LMT for some deap tissue massage, yea it hurts like heck for a couple days but then the muscles let go and it feels better. I only go once every three weeks, wish I could afford more.

lizbond36
07-17-2011, 11:53 AM
Yes and yes, I do get shock feeling where my whole body will shake. Its runs down my spinal cord. Yes there is days I can't move my arm. I have some good meds for this however some days they don't work and other days wonderful.
Hugs
Liz

Peridot20_Gem
07-18-2011, 06:02 AM
Hi Gary,

How you feeling mate since we last spoke and is the pain still as bad...i'm hoping it's not and also giving you a break.

Terry

gkf109
07-18-2011, 03:26 PM
Hi Terry, I am still having pain hope it goes away soon,but I don't think it will,how are you doing hope all is well!

Peridot20_Gem
07-18-2011, 05:22 PM
Hi Gary,

Sorry to hear your still the same mate...the Rheumo told me with this pain we suffer besides joints and my GP agreed because i always check with him because of my other meds, that whatever meds i take for the Lupus i can take upto 4000mg daily of paracetamol, when i reach 3000
mate i'm on another planet...it may be worth checking out though but just don't start taking them.

I've been relaxing more today Gary and been reading all night as i woke this morning half my face paralised off the sjogrens i just hate that as it feels like a stroke and my left calf keeps swelling of the Scleroderma.

mdawncooper
07-25-2011, 10:34 AM
I am experiencing the pain in the shoulder too. I have a call in to my doctor now but even though it sounds strange, I am glad to hear of someone else experiencing the same issues.

Melanie

Peridot20_Gem
07-25-2011, 05:05 PM
Melaine,

Your not alone mate concerning the shoulder issues with pain and sometimes if it hits you bad...i feel it in my lungs more which really drgs youdown. xxx

gkf109
07-25-2011, 05:18 PM
Its been almost 2 weeks since the pain started, I still have it, it has not gotten any better or worse, Its just there, but I started to flair the other day so i ache all over!

Peridot20_Gem
07-26-2011, 04:05 AM
Gary,

I really sympathize with you mate and a good many more of us because it is pure murder at times...it's like my legs today when i stand i feel like they're going to go from under me painful but weak.

A flare can be terrible but you do need some good cream to help you mate.

Thinking of you Terry