My wife and I recently went to a Pain Doc due to severe back pain (my Wife who has GCA). He had her do 6 xrays from her head through her hip. During our visit , he mentioned to his nurse "Paget's Decease". Afterwards we both looked it up and was surprised that the symptoms for Pagets were very similar to GCA. We won't see the Doc for another couple weeks, but does anyone else have comments on this?
Thanks, Jim & CJ
Having checked to be sure - I don't see the similarity to GCA except when it affects the skull when it can cause headaches. Otherwise they say "bone pain" - which I have never heard people on the forums complain of.
I get bone pain every three weeks in various parts ( long story, not Paget's) very occasionally in the pelvis, not actual hip joint. This sort of pain is different in that it is really inside, you can't get hold of it or massage it, though some conditions can have a painful spot of bone. It can be gnawing in a spot or in a line along a long bone. Its not affected by moving joints (unless the bone affected is in the joint) and the soft tissue like muscle and ligaments don't hurt. Trickier to get rid of than other musculoskeletal pain. Not like electric shock type or hot wire type pain of inflamed nerves like trapped nerves or shingles.
If in the case or Paget's where the bone becomes damaged it may affect other types of tissue like nerves or joints eventually when they get unnatural wear and tear or compression.
Anyway, this might help to work out what type of pain it might be while you're waiting. Have you made a list of what makes it better, what makes it worse and timing?
Good luck,
Thanks SnazzyD,
We do need to make that list. Right now she is on 5 mg Vicodin every 5-6 hours. Does relieve some of the pain. Currently holding at 35 mg Prednisone two hours before the Vicodin in the AM.
Thanks Again For Your Reply,
Jim & CJ
Also, posture, how much activity, what type of activity. What does the pain do? Stay still, shoot, radiate out? Do the muscles get tired? How long do symptoms last for or die down after various things other than meds. Any uneven weakness? Odd sensations anywhere like pins and needles? Numbness anywhere? Does rest help? Does it hurt at night? The list could go on.
You be asked all this but sometimes it is worth taking a minute just to distill it all down in case they don't.
Her pain will radiate and she gets tingling around her lower ribs. Also numbness in her foot and pain in her finger tips. She sees some relief about an hour after the Vicodin. Certainly getting tired very quickly.
Not A Whole Lot Of Fun For Her,
Thanks SnazzyD
Jim & CJ
Now I'm a nurse not a doctor. It sounds like some of this pain is nerve related because of the altered sensations and pain running a long way from the problem areas. I know all pain is from nerves but one type is the nerves picking up trouble from chemical messages sent from inflammation in an area and sending pain signals to the brain. Your Vicodin an opiate by the looks of it, is dealing with that sort of pain. The other type is the nerve itself getting irritated, damaged or inflamed directly. Yes the brain pain centre will be knocked out for a bit but the nerve will still be jangling. It may be worth asking about a nerve pain type drug called Amitrityline (also used for depression in a different dose) which can be really effective if they decide the pain is from that type of cause as well. It needs a discussion as pain relief is quite a complicated business and not always achieved by just hitting brain out with opiates along with all the other side effects.
This post has made me think. My paternal grandfather, who died before I was born, had Paget’s Disease. I have experienced leg and skull pain that I would describe as deep bone pain but nothing has ever shown up on my numerous scans and X Rays.
I thought Paget's could be diagnosed by xray and blood test.
Since 2011 i have had GCA. Being on Pred. Until 2015 then had a free 12 months. In june 2016 i had a flare up. I suffered terrible with my back, would start to walk and if on a slight incline my whole spin would feel as though it was crumbling. They ref. me to phiso. And they ref. Me to cropodist. I thought this is a waste of time. They made me molds to fit inside my shoes, i could not believe it 90% better. They are quite easy and fit in most shoes. Flare up now again (march 2017) thats why i am up at this unearthly hour!! Hope this helps
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