I haven't been on here for a while as I had the good fortune of going into remission on all fronts around Christmas time for about 5 weeks but of course it didn't last. Currently my PMR symptoms are not as bad as they were but they have returned. I also have a left shoulder impingement which is adding to the discomfort. That was revealed on an MRI in January. Something that is very worrying at the moment is that I have a very stiff neck and a headache which is at the back of my head and horrible numbness with pins and needles in my hands which keeps me up virtually all night.
I am having the second of a new infusion on Wednesday for my RA but in the meantime I am thinking I need to just up the Prednisone to 15mg from 10mg to see if I get some relief. I live in dread of GCA and am hoping the head and neck issue is referred pain from the shoulder impingement. Any thoughts would be appreciated.
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Laurapc
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I think you are right to wonder if this is possibly associated with the shoulder - but it still needs to be considered it could be GCA. Have you spoken to your doctor? If not, in the meantime it might be an idea to try a bit more pred and see if that helps. If it doesn't (and it may need more than adding 5mg) it probably makes it more likely it is a mechanical problem with tight shoulder and neck muscles that are irritating a nerve. But safety first...
Thanks for the link. I do just have tingling in my hands - no other symptoms. I also have a lot of pain in my finger joints which is directly attributed to the RA. I just discovered that vitamin B6 can be also responsible for tingling and numbness. I have been taking it daily for a few months after my local pharmacist suggested it. I can't imagine that would be the culprit but I'm not going to take any more.
This isn’t a ‘normal’ headache. It’s directly above the stiff neck and only hurts when I move my head from side to side. I will know more tomorrow once the extra pred has taken effect.
Then that sounds more mechanical - I used to get headaches in that area and it was entirely due to tight neck muscles. Painful but a lot less risky than GCA.
I remember a doctor years ago giving me muscle relaxants for this problem.
That could be a solution.
I upped the Pred last night (I take it at bedtime) and mistakenly took 25mgs - I have 10’s 5’s and 1mg in preparation for the taper that I doubt will ever happen and I picked up the wrong ones. The result being a much better night, reduced hand pain which I would have expected. Less pain and stiffness in my neck but I do agree with it being mechanical - especially as there’s a crunching sound when I move my head from side to side.
I’m not sure what to do about the pred dose now. Should I stay at 25mg?
I suppose that’s a ‘yes’ after the first good night’s sleep in a while.
Muscle relaxants make all muscles relax - I prefer targeted physio approaches, our physios do massage and myofascial release and that is great.
That's a big "up" from what you have been on - think you need to speak to the doctor but it probably might be a good idea until it all settles down. The pred at that level will also work on any RA-associated pain.
I had similar pain in my head and neck until I was given Botox injections into my trap muscles and up the
Back of my neck and around the back to the top of my ears. (Occipital nerve). I get them now every 6-8 months. A miracle cure for me after years of difficulty driving because of lack of range of motion in my neck.
I’m struggling with some right shoulder pain now. I was told it is probably an Impingement, though Im not sure how impingement develop. I will probably have to get a steroid injection at some time. But my osteopath worked on it last week at it has eased quite a bit. I also am following some new exercises on you tube, combining them with some things my osteopath showed me. If I get pain in my shoulder, the exercises make it go away. ...at least until the next time I do something that triggers it.
I really hope you find relepief soon and that this head and neck pain is not the beginning of GCA. Have they offered to do a ultrasound on the temporal artery? What are your ESR and CRP like?
I haven’t got that far yet, I’ve just had such a bad week I needed to get some opinions. I believe the head and neck problem is mechanical. The problem is when you have 3 conditions running along side each other affecting the same parts of the body, it drives you mad working out which pain is which. We all know that I’m sure.
Yes I agree it is very hard to tell 'what is causing what' sometimes. Likely you do have a 'mechanical' problem but you do need to be as sure as is possible because as PMRpro suggests GCA is potentially a much more serious concern. Without worrying you unnecessarily I'd say just to remain very aware of any eyesight changes and if you do get any go straight to ER to be on the safer side - because then you'd certainly need a much larger dose of Pred - way more than a mere 5mg.
Hindbags and I seem to have had very similar neck and head issues in the past. Your head issues sound like they are bilateral occipital nerve pains , and they can be caused from shoulder impingement or made worse by your RA and PMR.
The same can be true for your growing pins and needles and heat in the hands , I get this in both my hands and feet . Part of this burning pain will be part of your RA condition , it is not uncommon in winter to have increased pain in all of the joints.
If you have shoulder conditions from PMR , RA and impingements it can also be something called Peripheral Neuropathy, when the pain from one areas presents in the small nerve fibres away from the cause of the pain not just in the area it comes from.
This happens alot more to women than men , and can be eased with other painkillers apart from Pred.
Are you on any other pain medication or anti-inflammatory apart from infusions to help with your RA ?
Is the pain worse in your head , neck and side where you have the impingement?
It is very complex when you have more than one pain related condition that affects the same parts of the body.
It may be worth trying a standard anti-inflammatory for the pain before increasing the steroids to see if it works , and using some heat therapy on the shoulder and wrists and very light rotating exercise .
It may also be a good plan to discuss this with your GP or specialist before the increase of Pred.
If it is occipital nerve pain or other neuropathy a different sort of nerve relaxant may be prescribed and give more relief than the steroids .
Taking Omega 3 , Vitamin C , zinc and magnesium and garlic supplements can help with any inflammation affecting the joints and neck . Taking a vitamin mineral complex would still be advisable to help those joints and an omega 3 and garlic capsule. Keeping away from foods high in Omega 6 is sensible for any inflammatory condition as it increases inflammation.
Hope you get some relief soon , and a visit to the GP can resolve the cause of your pain.
I have been supplementing with max strength Cocodamol for sometime having moved up from paracetamol and ibuprofen and I've been taking vitamin supplements for decades.
Incidentally, the neck and head pain is worse on the opposite side of the impingement.
Codiene is well known for being a drug which can cause headaches and extra pain as it leaves the system making you want more , it's the Codiene cycle , which is why it is highly addictive as a painkiller even if taken over short times at low doses.
I would definitely go to the GP to discuss all of the head and neck pain .
As someone else said they may try you on something like Amytriptyline or a similar nerve blocker first . I was originally given Garbepentin for the head pain and Trigeminal Neuralgia , but now have Pregbalin alongside the Pred because it helps more with occipital pain and has less side effects.
It is definitely worth ruling out that the pain isn't coming from other sources or an increase in your PMR as soon as you can . Just taking an increase in Pred may fix the pain feeling but it could mask the actual cause of it . The GP could refer you to the Pain Clinic and organise tests for GCA if it is a possibility and put your mind at rest.
The pain clinic could give you choose to give you targeted injections that are suitable for PMR and RA causes or be able to refer you for assistance with the impingement.
Thankfully I don’t have RA. Head and neck issues were there before PMR. So Botox before PMR. Shoulder issues since PMR.
Tylenol helps my shoulder, but these new exercises seem quite effective putting things back into place so that I’m not hitting the impingement as much. However, I probably would not have been able to do the exercises if not for the osteopath manipulation first.
Yes , there are so many out there and although it is all about some trial and error for each person based on their symptoms , having things to try that others have already found helpful on a video without having to Search thousands of links is always so helpful.
Thanks so much , I bet they will help alot of us and we can have confidence that someone else has tried them and found some relief. Have a great trip , Bee xx
Just to add a little comment to this thread. Laurapc my PMR gave me what I called a 'crunchy neck' from the very early days. It was always an accurate sign for me that I had tapered too far, too fast.
I think that I meant to say that it was a pmr symptom and not something mechanical.
Hi Laura
Sorry to read about how you’re feeling & the issues you’re experiencing.
Prior to PMR l had a left shoulder impingement which was treated incorrectly at first with aggressive Physiotherapy until l insisted l saw a Shoulder Specialist & he confirmed an impingement, l had a sub acromial decompression but again the same Physiotherapist over treated the shoulder resulting in a frozen shoulder, which led in a matter of days to undiagnosed PMR but the Pins’n’Needles in my face & neck used to drive me mad, my neck & face was always cold & gradually it got to a point where l could never get warm. I saw a Pain Management Specialist who’s first thought was, it was possible PMR but l was a bit too young for it 😉 however, that didn’t deter him. He recommended Amitriptyline at night as a muscle relaxant, did bloods & sent me to a Rheumatologist who did indeed diagnose PMR.
Roll forward five years when suddenly the other arm, shoulder started to give rise to similar issues, so my Rheumatologist referred me to a Shoulder Orthopod who recommended Physio 😱 but gave me a Steroid Injection first, OMG it was like a Miracle, l went to Physio but wouldn’t allow them to actually touch my shoulder, we discussed the recommended Exercises but politely declined any further input & proceed to do all the exercises myself!
I have full use of both shoulders now & do exercises each morning. Some very simple things like sitting in bed with my arm/s either on top of my head touching the other shoulder or simply straight up!
I would suggest you see your GP ASAP to see if they can spot what is going on as there is always the GCA Risk with any unusual headache. Mechanical issues with your neck or shoulders can cause all sorts of referred pain & tingling depending what’s trapped.
Ahh! Another person who has suffered from the " one size apparently fits all" treatment regime of the physiotherapist , I do wish they were trained to give people exercises from the beginning for particular conditions and possible syndromes rather than going in with the same basic routines that may heal one but can cause harm to another.
With you there , even before GCA the Occipital Nerve issues I had for years and the physio gave me exercises for someone , as they always do with muso skeletal issues, I told her but no , walked out an hour later on wobbling legs virtually carried by the physio , literally green in the face with nausea , with her flapping about it being ok to take a break for a few weeks. Few weeks , took a month for the nerve pain to calm down .
Use occupational therapy unit now , they fit exercise and support to what you have and what you need to do at least.
Won't do physio until I have been properly diagnosed and will only advised exercises for that issue , but you shouldn't have to double check they know what they are talking about before you can trust them should you.
I have an active mistrust of most physios. After 9 shoulder ops over 14 years I have only ever found 2 that were any good unfortunately they were the last two and I had to suffer the others to get to these. Some were dangerously inefficient. Others just inept. Either way for there to be that many useless physios in one hospital doesn't say much about their selection process!!
I had one appt with a physio, it was before the PMR diagnosis which was very active at the time. I walked out of the dept wondering what was the point. I cancelled the next appt which didn't go down well. I really have to wonder if some of these people understand severe joint and muscle pain.
No is probably the safest answer. I have become an expert on what I can and cant do straight after the ops. My orthopedic consultant has no time for them and has a regular rant everytime I see him but still refers me there as its policy i think. I am supposed to get 6 sessions after each OP but I can guarantee I will see at least 3 physios as they are all either leaving for the states or to become football physios. No continuity so a waste of timex
I wonder why physios in the UK are so often so bad? James Cook at Middlesborough has some specialist ones - the knee guy has his own physio who is utterly brilliant. But the physio dept does some of the post op stuff - not so good.
The specialist shoulder physio is fantastic but normally I just see them post OP and they really are bad! After my shoulder replacement I was given exercises by the consultant for the first 3 weeks and then physio would take over. M y consultant exercises didnt involve any more that just making sure my elbow didnt stiffen up but the physio kicked in after 2 weeks and she said my consultant was wrong and didnt know what he was talking about. On hindsight I prefer to believe my consultant and not the physio.
I had impingment on my shoulder and I can definitely say the pain affected my neck and arm also gave me headaches but it was a different type of pain that pmr gives me. That being said I wouldn't want to rule anything out with your own issues and would definitely be querying it. Hopefully all it needs is a bigger dose of pred but definitely dont ignore your other symptoms.xx
Strangely after 4 yrs, 4 mos, when I have returning symptoms - start to flare - They are no longer in the usual places! Always up one side of my neck and into the base of my skull behind my ear. So weird! I asked my rheumy if he knew of anyone else having these symptoms and he just replied “NO”!
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