So I've been doing really well except the shoulder which hurts, most likely because of pinched nerve in neck, has bothered me since returning from trip. Couple of days ago noticed a slight tenderness in chest, reminiscent of what was probably costochondritis from pre-PMR days although I never had a proper diagnosis. Last night I couldn't sleep because of shoulder pain whenever I lay down. Ended up staying awake until after 4 am and finally fell asleep sitting up, but kept waking up because my legs kept cramping (which was another thing which worried me). When I took my prednisone (back to 2 am as it does work better for me than breakfast time) I took 5 mg instead of usual 2 and by morning did feel better and the day has been okay although I've been careful not to do any heavy lifting!
Question: should I take 5 mg again for a couple of days to see if it continues to help, and then drop back down again, or switch to acetaminophen tonight? I don't think it's PMR, but sometimes it's so hard to tell what a particular ache might be leading up to.
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HeronNS
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yes it is hard to tell sometimes, especially at such low doses…..think I might be inclined to try acetaminophen (paracetamol for UK readers) for a couple of days and see if that helps…if it does, you’ll know it’s not PMR. But a blooming nuisance whatever it is ….hope you soon feel better…
OH I feel your costochronditis pain. more prednisone wont help. BUT a few days at 5 wont hurt either and might take away some aches and pains while you deal with this. the tylenol should help.. It DOES go away ..well, you know having had it before... but what a royal pain. Hope you feel better soon. More water??I would say for the cramping and bananas but I suspect you do all this right anyway!! Hope hope you are better by the time you read this!
Well I'm up again. The Tylenol I took one or two hours ago has had absolutely no effect at all on my shoulder/upper arm. The costochondritis symptom which was so bad yesterday has really subsided, which is good, but it was better before I took Tylenol. It's inflammation isn't it, so the extra pred must have been all that was needed. But I'm at my wit's end with this arm. Thing is, nothing is hurting as I type these words but as soon as I lie down to sleep, there it is.
No extra pred. Not surprised Tylenol didn't work as I generally speaking find it relatively useless, but didn't want to take aspirin near pred dose.
The video looks really good and I'm going to try some of the exercises. I do have stuff from my physiotherapist, which I have been doing, but some of the moves here are different and might be what's needed at this time. Thanks!
I agree with DL , trying acetaminophen regularly through the day for a few days with some warm heat pads to the affected areas ( chest and pinched nerve area ) , plus some deep breathing exercises is worth checking.Trust your gut , if your mind is telling you it doesn't feel like PMR after all your experience of PMR flares it probably isn't.
Try cushioning yourself on lifted pillows with pillows to support your back and chest if you lay on your side with good support to your neck so you don't tuck or tighten it in. It should help with the additional pain from the pinched nerve.
Have you been told which nerve you have trapped ?
It would definitely explain the increase in leg and shoulder pain and numbness.
Trapped nerves can also cause us to breath less deeply and tighten our chest area causing nerve pain in the diaphragm similar to costochondritis but without the element of inflammation.
Drinking sips of cool water also helps to relieve the pain and chest tightening of costochondritis, and muscle or nerve damage effecting the chest.
Are you on any prescribed neuro pain medication?
If so , an increase of that may give you more relief than an increase of steroids.
Gentle neck exercise through the day may also help reduce the compression on the nerve , but it will take time for that pain to reduce , and you may even get episodes of twinging pain or numbness in any areas that the nerve is connected to until any damage has healed entirely. Hope you feel better soon.
Thank you for your detailed and thoughtful reply. Whatever is going on is definitely variable. One day I thought, Oh, it's much better now, good. A few hours later I was doing something quite ordinary and I heard, more than felt, something sort of click or snap, and ever since then the pain in the upper arm/shoulder has been as bad as ever - except for the day I took rather a lot of aspirin (over many hours) for a killer headache, and although I ended up woozy there was no pain anywhere! My only prescription is pred and I very much hope to keep it that way as long as possible. Hopefully physio will work better next session in a couple of weeks. I've tried various iterations of the multiple pillows I use to prop myself up at night, but unfortunately arm seems to be comfortable only when sitting completely upright, which is not very restful for the rest of me!
Ups and Downs , as ever. I've added in Pernicious Anaemia to my long list which is making the Dysautonomia worse but the injections have been increased to every two months so the neurological issues are settling.Poor Grandma , if your remember the nickname for my youngest , got a diagnosis of Classic Ehlers Danlos Syndrome on the same day as I got one , but she's recently started taking after me too much and has been diagnosed with Fibromyalgia and Chronic Pain Syndrome now too, only just 20 , so I'm feeling for her.
We have our family genetics consultation soon and are likely to get proof of a couple of other rare familial illnesses as well as the EDS , but at least it will give us all evidence for dealing with the Doctors, so the girls won't need to go through the decades of hell being diagnosed like I did . Which was my main goal to arrange over the last few years.
If I'd only been trying to sort things out for myself I would have probably given up by now and gone to the scrap yard instead!
Coincidentally I have (literally) just listened to an interview on radio about advances in using genetics to diagnose rare illnesses. Perhaps in the not too distant future a gene scan will be as accessible as a complete blood panel.
To be honest , I think it would help us all , including the doctors , if they started giving every new child a full gene panel , and all of us one now too. It would probably remove years of misdiagnosis and agony when unusual illnesses started to pop up , plus reduce the amount of pain caused by us taking certain medications that we can be intolerant too with certain gene mutations. Most importantly, it would show the gene mutations we have which can effect our absorption of nutrients which are impossible to discover with normal tests.
By knowing what nutrients we can't properly absorb in our individual bodies , preventative therapy could begin early in life and possibly eliminate one of the main triggers for many , many different types of illness which are effected by vitamin or nutrient deficiencies.
I was reading a study yesterday , for example , that was shedding light on the possibility that increased Fibromyalgia pain is linked to gene mutations that effect glucose modification.
Imagine a time when we could modify our diets and pharmaceutical intake in such a way that we could avoid triggering the onset of certain diseases at all.
I never got on to Actemra , because at the time I was rapidly weaned off steroids and it was concluded that the GCA was in remission I still didn't get a local Rheumatology appointment. I've still not had one , and in fact , despite urgent requests from four different Consultants from other departments have not even been acknowledged in three years.My Rheumy physio is of the very angry opinion that they are trying to avoid the appointment because they know that they know nothing about my conditions and how to treat them and wouldn't want to have to put that on record , or try a diagnosis change which would cause more harm than good.
As the physio told me , very angrily, that he had asked them for advice about dealing with a patient with Dysautonomia, Fibro , EDS and GCA and they told him bluntly , " We haven't got a xxxxxxx clue there , you probably know more about that than we do " I chose to leave the fight for that appointment until other things were sorted out as it is highly unlikely that they would consent to biologic treatment in my area except for a last resort , and my current active health issues would not benefit from it now.
If they are going to misdiagnose me for the fourth time I'd be better off without them. If I need to get extra Rheumy help in the future I will do it after my genetics panel when they can't argue with the results or will probably invest in a Private Consultation with the Rheumy I saw at the Behcets Clinic whom diagnosed a lot of my problems . Everything but Behcets!
I'm also stuck waiting for the Consultant ophthalmologist and haven't seen them since before Covid , so I have no idea if my Anterior Uvietis is active at the moment or not. That is all down to short staffing though , as it was that Consultant I can thank for spotting the GCA and acting on getting tests so quickly.
I can get an Emergency Eye Clinic appointment with a phone call if I need it within 48 hours but , touch wood, the exact variety of eye symptoms that were occurring when the Uvietis was active have not shown up recently.
I've recently been diagnosed with Pernicious Anaemia and looking back at my blood tests have probably been suffering with it for decades without it being spotted. That B 12 deficiency was clearly a huge trigger for my neurological symptoms, migraine , pain , fatigue and Dysautonomia. Since starting the treatment for it my symptoms for many of my conditions have reduced substantially. If you haven't been getting regular B 12 blood tests I'd suggest you get them now , as the effect it has on so many symptoms is worse still than Vitamin D deficiency. I was heading towards Prediabetes and beginning to put on weight rapidly over the space of a few months because of the low B 12. Imagine , Moonface with no steroids!
The big difference was finally getting my Cardiologist to try Midodrine, as it was the combo of a genetic heart fault with the effect of EDS on the elasticity of my veins that was pushing the Dysautonomia out of control. That has made a big difference to symptoms and neuro pain. Funnily enough , when we went to renew my prescription at the chemist he said it was odd as he had never prescribed Midodrine before , but suddenly had five patients starting on it in a month. So perhaps , I did a bit of good for some other patients whom see my Cardiologist too. Give him his due , each time I have a health emergency now it must get flagged in the system and he rings to check what's going on. Not sure if that's such a good thing , shows what an unholy mess you must be when they actually start taking notice!😆😆😆😆
Thanks for your kind words , if all else fails we can always go to the same scrap heap , at least we would have a friend to talk to once we got there. Take care , Bee
Sounds interesting , if you can let us know what they find .Yes , there is that issue in countries with private medical insurance isn't there.
Perhaps you should get a panel done via a Government scheme which you are allowed to keep confidential, even from the all mighty insurance goblins , until it becomes important in your treatment , but it could help you make the right diet and exercise choices early in life which would hopefully mean you didn't need to use the health insurance so often anyway.
Just imagine , how much they would have saved over the years on tests that weren't needed or treatments that wouldn't work because of your individual profile and all the endless Consultants appointments!
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i dont know what is going on!!!!!
following on from my last post …….Turns out no PMR or GCA
Is it PMR, Old Age or what?
Pred reduction to discover what?
fatigue hits like brick at times on prednisone
