From Pins and needles to Smocking.

[Dewdrop456]

Following on from my post about severe numbness and tingling Iam sad to say that it has now progressed to bouts of agony .My arms feel like they have been bashed with a hammer. The blood vessels engorge and look like Smocking at my wrists .My hands become unusable .I think the muscles are going into a spasm .It goes on for hours at various pain levels.Someone suggested Magnesium might help.Two doctors advised fast tapering with the Prednisone .This was before the escalating new pain.

Now I sit on the side of the bed rocking or pacing the room at 4 am .I try to prepare breakfast with two unusable arms and hands so that I can take the Magnesium and Prednisone .This can't be OK.

Thank you for listening ,it makes me feel not so alone in this.

[SheffieldJane]

I am replying so that you don’t feel alone. I have nothing in my experience of PMR or Pred to share that would be of use. I do feel that your symptoms are atypical and may well indicate that something else is going on. You really need to be referred to the appropriate specialist. Your current treatment is either having no effect or is making your symptoms worse. I wondered about another form of Vasculitis? Either way, I think there needs to be a sense of urgency in your treatment. I wish you well, it sounds horrible and alarming.

[Dewdrop456 in reply to SheffieldJane]

That's very kind of you and thank you for your support.I think we eventually try to accept PMR in all its glory then something else appears and it's exhausting mentally and physically . I managed to see a different Doctor today. I was worried about the long week end. He listened carefully and didn't just jump onto the PMR band waggon.He thinks it could be a trapped nerve and has ordered a X Ray.I am to try some nerve numbing drugs too.

Good luck with your journey too. I always read your post ,they are always helpful and kind.

[SnazzyD]

This doesn’t sound typical as SJ says, especially the blood vessels engorged which suggests either severe inflammation or some sort of disruption of the blood flow back up the arms or both.

[Dewdrop456 in reply to SnazzyD]

Thank you.I saw another Doctor today.Please see the reply I sent to Sheffieldjane.I am hopeful now for a correct diagnosis and treatment .Good luck to you with your journey too.

[PMRpro Ambassador]

I think you need a doctor to take you seriously and try to work out why. Because no, this can't be OK.

Has anyone checked your BP?

[Dewdrop456 in reply to PMRpro]

Hello, that's a good idea but my blood pressure was good again today. Please see my reply to Sheffieldjane .I am hoping for some answers soon. Isn't it annoying how dependable we are for the Doctors to think outside the PMR box sometimes?

Best wishes to you and thanks for replying.

[Hollyseden]

Ouch poor Dewdrop. I hope you get some good advice about this. It sounds horrendous.😣

[Dewdrop456 in reply to Hollyseden]

Thank you,finally a Doctor isn't blaming PMR and is sending me for an X Ray so hopefully I will get a diagnosis and appropriate treatment .Kinda wishing it is PMR related now as we all cling to the hope that it will all go away in time.But a New Thing might be even more scary!!!!!

Good luck to you and thanks.

[PMRpro Ambassador in reply to Dewdrop456]

OTOH - if it is a mechanical problem they may be able to sort it out.

[Dewdrop456 in reply to PMRpro]

Well hopefully,but if it's my bones crumbling that's not good. (Borderline bone scan results )But I agree ,progress has been made.Although not sure a XRay will show much ,surely I need a MIR scan.Anyway it's a step in the right direction.

Bit annoyed though because a few months before I was diagnosed with PMR ,I told the Doctor that I had constant severe pain at the base of my skull. Her advice was to see a Chiropractor,which I did without much success . It was only the PMR steroids which stopped it. Now this new Doctor thinks this is where the new problem stems from.Meanwhile the cause has not been addressed all these months.

Thanks PMRpro.I'm very grateful to you.

[PMRpro Ambassador in reply to Dewdrop456]

Just because your bone density is borderline doesn't mean you will crumble in a heap. What were your t-scores in the dexascan? Often doctor portray them as far worse than they really are.

The constant severe pain at the base of your skull could have various sources - and one is GCA - occipital pain is particularly typical in GCA but many doctors seem blissfully unaware. The fact it improved with pred increases the suspicion.

The x-ray is quick and easy to access and will rule certain things in or out to decide whether an MRI is called for.

[Dewdrop456 in reply to PMRpro]

Right,I see,I will find out what the t-scores were.

Not sure what to do about the next bit ,I don't seem to have any other of the signs or symptoms for GCA.

My X Ray is on Wednesday so not long to wait.

Thanks again and best wishes.

[Dewdrop456 in reply to Hollyseden]

Thank you,finally a Doctor isn't blamingPMR and is sending me for a XRay.Hopefully I will get a diagnosis and appropriate treatment .Kinda wishing it was PMR related now as we all cling to the hope that it will all go away in time......but a New Thing might be even more Scary!

Thanks and good luck to you.