Hi all , i need to pick your brain about arm snd neck pain . I have Sjögrens and along with the usual dry eyes and mouth, i also presented with lymph node enlargement, muscle and joint pain and extreme exhaustion. I have been getting rituximab infusions for over 2 years now the last on was the beginning of April, and they have made a big difference. I still have some lymph node swelling with pain going down inside of arms from armpit to thumb and index finger worse on right, along with this i have occipital pain . I asked the gp about it and he thinks the rituximab hasn’t full kicked in but im worried about trapped nerves , though neck xray showed nothing of real interest , or something related to the lymph nodes. I do take Etoricaxib for the neck pain and lyrica for muscle pain . The arm and neck pain is worse in the evening and the arm pain increases when im walking, its hard to get comfortable when sitting or in bed . Does anyone have something similar and do have any advice as im getting fobbed off by the doctor. Thanks xxx
Arm pain 😣😣😣: Hi all , i need to pick your brain... - LUPUS UK
Arm pain 😣😣😣
Sorry that you too have a lot of pain just now W. Have you had nerve conduction tests at all to check for nerve entrapment? If not you could request ah EMG of your arms. Do you get your blood tested for inflammation as this might be helpful too and if this area is very inflamed then you could perhaps request a course of Prednisonone?
I have bilateral pain and very swollen stiff hands in the mornings and pins and needles in both arms 24/7 now. Same in legs. I use soft pillows on either side of me to cushion my hands and arms and a memory foam pillow moulded before bed time to support my neck. It’s as if my arms are made of lead when they are resting. I think it relates to high inflammation and fatigue with me - perhaps your rheum needs to introduce a new approach? Hoping you feel much better soon. Xx
I just wrote a long reply and ive lost it !!! Too tired now will write again in morning, sorry. Xx
Hi Twitchy , hopefully this post won’t disappear!! I have similar problems to yourself, not as severe. My inflammation levels are always high with particular swelling in hands and elbows . I feel the pain is nerve pain as it is a burning pain , however the gp feels because of the xray that this is probably not the case , however it is getting worse so I would like to know the cause as im running out of cushions 🙄 !!
Oh dear we Sjögren’s warriors are both getting to end of our tether with pain now! X-rays won’t show inflammation, nerve damage or entrapment so your GP should be sending you for EMG. I’m seeing rheumy chap privately on Thursday evening about pain so will try to post.
Mine feels not so burning, more like toothache everywhere ie bone pain and my EMG was normal so I’m guessing the pain is all in ligaments and tendons and small nerve fibres. But anyway it’s affecting my entire body now - particularly my hands and knees overnight and in mornings. Clearly flaring.
Seeing wonder GP tomorrow as I’ve run out of Zopiclone and have no meds for pain at all. If they try and tell me it’s all OA or functional Fibro pain I won’t be responsible for my words!! 😏🙄
It’s obviously very difficult to determine the exact cause of this type of pain and it’s also difficult to get doctors to listen. I wish you lots of luck with your app on Thursday, I look forward to hearing how you get on and hope beyond hope you might get some answers as its the not knowing thats the worst xxx
Thanks W - I’m hoping to get something for the pain at least - maybe an IM steroid shot. Xx
Have they ruled out angina? It can present with arm pain that worsens with exertion. Do you ever feel short of breath?
Angina has been ruled out Tynemouth , I don’t have shortness of breath, which is one good thing !
Test
I presume you mean more tests ? Well I need to put pressure on my gp and convince him !
Dear Weathervane, I am sorry to read that you are suffering acute arm and neck pain right up into the occipital as I also get intermittent pain along a similar track which is so bad it makes me nauseous - so I really sympathise! I find that along with pain meds, heat in the form of hot water bottles helps me and when I have mentioned this to others with autoimmune pain heat has also helped them. However, you should just check that in your case the other end of the extreme - ice packs (frozen peas) are not the answer for you. Let me know if this does not help and I have one or two other suggestions but this would be my first line of attack. With very best regards, Lily
Thank you Lily , i do use heat , particularly on my neck and do neck stretches which gives some temporary relief . Do you know what causes your pain ?
Thanks Mum for your kind reply . It all sounds so similar, there is nothing outwardly visible with this type of pain but it wear you down as its constant! I hope you get some help when you see the rheumy, i have mentioned it to the rheumy but because I usually see her when getting rituximab she is usually in a rush and it gets passed over .
Dear Weathervane, firstly sorry to confuse you with 'test'....I have recently written posts only to find them not register so I was just checking before I replied in full. Secondly, sometimes I can track the pain back to overdoing it, especially picking up something too heavy like a pan and I have to pace myself and do chores in batches and not all at once so as not to set up a cycle of pain. Then other times, I can get into pain for no particular reason other than perhaps a sensitivity to changes in barometric pressure.... storms, heavy rain.
I have also found that lightly massaging either ibuprofen max strength gel or a high quality arnica gel like A Vogel into particular areas of pain (such as the temple) adds relief but it is not the whole story - I still need the heat and the meds and rest to get on top of the pain.
The bottom line is you should not be left in extended pain by your GP particularly if it is detrimental to your sleep hence the wise Twitchytoes' suggestion of a course of steroids. Otherwise, I have benefitted hugely from acupuncture for both specific areas and general pain. Sending you my special thoughts for a rapid solution, with very best regards, Lily
I think my pain is worse when im walking and my arms are hanging, i need to put them in my pockets. I usr volteral 12 hour gel , helps my neck more . I had a steroid injection in March when costochondritis was severe so maybe too quick again , but i have had acupuncture with success in the past for back spasms so will think about that , thanks for all the advice xx
No absolutely, if you have already had a steroid injection in March. I have had similar, and have also resorted to slings at times. Weight off and rest are powerful remedies I have found. In my own experience and from my research your multidisciplinary approach combining the best of orthodox medicine plus alternatives, tailored to the individual, works best for this complex condition. With very best regards, Lily
Just wondering Lily if you have used acupuncture? Was wondering where they put the needles as don’t fancy them in my neck !!!!
Oh my goodness I know exactly what you mean, so many tests and so many needles put me off acupuncture for some time and were it not for 3 months of continuous extra knee pain, I probably would never have gone. I read that you have really been through it and have had to be immensely brave. It was my last resort but the needles are actually incredibly fine and almost difficult to see so apart from the odd one which pricks as it catches a sensitive point, I barely notice the vast majority which go in my legs and arms mostly. However, you should tell the acupuncturist about your neck and she may be able to use some little heat pads they use instead called moxa or work around it. I always recommend that you go to a very well trained and/or experienced acupuncturist if you have complex pain or an autoimmune condition. Membership of the British Acupuncture Council is a good starting point. I went every two weeks at the beginning and the pain in my knees had reduced by 80% in two sessions and I now go every 4/5 weeks for maintenance and to address problems as they come up. With very best regards, Lily
The physio i went to years ago was a brilliant acupuncturist but unfortunately she has moved on so will have to do more research, it was the only thing that helped the spasm in my back , I couldn’t hardly move ! I do like to use alternative medicine where possible , despite also receiving rituximab which cannot be classed as that!!! I will also do some research into moxa and find someone who also uses that if possible. Best wishes, if I find anything useful I will post xxx
Hi WV, I also get the random pain in places like my arms along with the usual joint pain in knees and shoulders. I've also had the eye pain and swelling. For me it's just a part of the Sjogren's inflammation. Also, it seems that when the immune system attack my muscles it is worse on the left side of my body which is my weaker side. I've found that working out to strengthen the muscles does cut back on the pain some. Have you always used heat to relax muscles? I've been reading on cryotherapy treatments for arthritis. sounds promising although I hate the cold! Hope you feel better.
Hi wsjkcj1 , I think that my doctor thinks the same , that it’s inflammation ☹️ . I suppose im worried its from a trapped nerve or the swollen lymph nodes in my armpit, its so hard to get a 100% definite answer . I do use heat which gives temporary relief, I need to get a new slightly bigger heat pac , I meant to look today but of course I forgot 🙄
I hope you are keeping well at the moment and the pain is under control xx
As a person who wants to know exactly what is going on at all times, it's hard for me to just chalk random manifestations up to Sjogren's but not even my Rheumy can understand every aspect of the disease because she only treats the symptoms. Hope you find relief. I'm doing ok at the moment (knock on wood) 
I do understand what you mean , i have met so many doctors that think its just dry eyes , i have to try and explain all the other symptoms, i feel like a hypochondriac. Keep well xx
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