Looking at your past posts you have been on pred for at least a couple of months - so yes, the pain could well be withdrawal. Do you also feel unwell? If you feel shaky, confused, as if you will collapse don't hesitate to get immediate medical help because your adrenal glands may not be functioning normally again yet.
Do keep a close watch - and head for medical advice (preferably from someone else) if necessary. To tell a patient to reduce from 40 to zero in 9 days after 2 months on high dose pred is rather cavalier to say the least. Could be negligence if it goes wrong.
Listen, those near and dear just don't want there to be anything wrong with you. They may not be able to understand, but they do care.
But you have to make it clear that you're just not well and need their help. Doctors may not know what the trouble is, but you sure know what the symptoms are, and how debilitated you are.
You have to ask for what you need. Most likely, they'll respond.
Are you on any other prescribed pain relief or muscle nerve relaxants to help with the pain?
Have you tried non prescribed pain relief like Paracetamol since reducing to zero and did it have any effect?
These are important questions for you to consider now before seeing the Rheumatologist .
As , if it is neither PMR or GCA , but giving you severe pain in many pain spots and Fatigue you could well have something like Fibromyalgia or other Chronic Pain condition ( yet another badly understood condition in the medical community ) and you will still need some appropriate drug regime and physio to help you cope with the problem.
You mention not having any nerve issues but these are very widespread .
It can include numbness or pins and needles in the skin or extremities that happened prior to taking Pred.
It includes loss of balance , coordination , brain fog and short term memory issues , recurrent headaches or migraine and sinus issues and prickling in the face .
Vision issues can also be part of many neurological or other autoimmune conditions.
It even includes problems with appetite , changes in toilet habits , digestion , libido and sweating or shivering.
If you had any of these symptoms Pre Pred they need to be highlighted to the Neurologist and Rheumatologist as well as the pain you are suffering now since reducing Pred.
Write down everything you remember about your current symptoms , pre Pred symptoms , and symptoms while on Pred so you don't forget them all and they will help them make better decisions on what to do next by being able to make comparisons.
If your pain and symptoms were significantly better on Pred , then they should both be looking for the possibility of other Autoimmune or Autoinflammatory conditions that respond to Pred like GCA/ PMR do with the reduction in pain.
If you only controlled your pain by 50% or less , you could well have something that involves fibromyalgia or neuralgia as part of it group of symptoms , and that does require referral to a Pain Management Clinic , and Physio as well as nerve medications to help which your Neurologist should consider during this first appointment.
Both Departments will need to work alongside the GP to decide on what needs assessing to help them get the right diagnosis , thus will definitely require more blood tests , including things like your Thyroid Profile , so if there is a whiff of the thought of discharge in the air , ask them flat out if they are considering that and point out that they still need to work together to properly diagnose you before they consider doing that.
You will get there , and keep posting while you go through it here , you aren't getting away from us that easily get , and until you know definitively if you have GCA/ PMR or something else with its own support groups we will always be here to help you with a hug of strength and some helpful advice.
Thank you for that very comprehensive (and kind) reply, B.
I think that because my esr/crp were normal the rheum won't consider pmr.
The GPS that I work with are of the opinion that this may well be one, but sadly they can't treat me.
Not sure if this is relevant, but for the past 3 or 4 years, since travelling in SE Asia, I've had episodes of fatigue, muscle/joint pain and dizziness every 3months or so .
It usually lasts for about 10 days and then goes away.
I've never been able to see as GP while it was going on so it's never been investigated, but I wonder if this might be mixed up with what's going on now.
Certainly, the symptoms seem very similar.
I've tried taking paracetamol and ibuprofen, but they don't seem to help.
I'll keep checking in to the forum. It's such a great source of knowledge and support.
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