Hi and need help please

I want to say hello and thank you for listening. I also want to say I am so sorry for everyone here who suffers with RA. I suffer chronic pain and I also have cancer.

I had a two level cervical fusion about four years ago. I see a pain management dr who I love dearly. She is compassionate and helps everyone so much.

I am in a diagnosis struggle now waiting to find out what is wrong with me now. I have pain across my shoulders and upper back. I wake with it and it doesnt slack off unless I take opiates. I feel worse when sitting still. The longer I sit the worse I feel. After thirty to sixty minutes I HAVE to get up and move. I get some relief from movement. Drs tell me this is not osteoarthritis. Pain management is saying RA or Polymyalgia Rheumatica. I have no idea but I am just so tired of waiting and suffering. It just takes a toll on you both mentally and physically. It will take me five weeks to get into the Rheumatologists office. I still have two more weeks to wait. In the meantime I take the meds I have and wait.

Pain across upper back is my main complaint. The muscles are extremely tender to the touch. Also after months of this my hip area is getting more painful. Pain across my upper back has been going on a while but getting worse. Lastly my fingers are now hurting, stiff and painful. Also my toes are now starting to hurt. I know there are no drs here but I would love to hear any opinions please. I so bad want to try prednisone to get some relief. Opiates work well but I never have enough to last me as with the opiate crisis drs now give out so few. Does this sound like RA? Is anyone here familiar with Polymyalgia Rheumatica? As I read and study both diseases I see the symptoms of both are very similar. Both can involve fingers and toes. I have taken Celebrex and voltaren along with other anti inflammatory meds but no joy on relief. Tried voltaren gel also.

Thank you so much for reading all this.

Post Edited (oceanfisher58) : 5/22/2021 6:59:03 PM (GMT-6)

I think prednisone is completely reasonable to try. I am familiar with both. I jus got off prednisone and it worked like a charm. Now on Methotrexate. Have you done any Mindfulness. Has helped greatly with my pain. I so hope you get some relief soon. I too have a cervical fusion. In having Ehlers Danlos I too am no stranger to this pain thing. Historically I have learned that everything changes-- even pain. Keep us updated.

Thank you for the replies thus far. New update. Finally got in to see Rheumatologist. After looking at my blood work which pain management dr ordered I found out two out of five tests came back as abnormal. One was for lupus and another for inflammatory markers. The new dr started me on prednisone 20 mg daily for a month. This to be followed by 15 mg for a month then 10 mg for another month. At that time I will be reevaluated to see what is going on. Her diagnosis was Polymyalgia Rheumatica. I have some symptoms of GCA also. She was not sure about lupus at this time.

It has been two weeks since starting the prednisone and I do feel somewhat better. I stopped the Celebrex. The first week on prednisone I could honestly see very little difference. Marginal at best. By the second week I was able to take less opiate meds and could space my opiated meds further apart during both day and night.

I have never gotten much relief from OTC meds. I have tried. I have a team of drs as I have cancer along with degenerative disc disease. In other bad news surgeon wants to fuse more levels which I am not happy about. I try hard at mindfulness but its a real struggle for me.

Thank you WI Chica and Camama. I don't want to compare my pain to anyone else as I know we all struggle with pain. The long nights being awake in pain is just horrible. Sometimes my meds work well and other times nothing seems to help. I just take everything the drs give me and hope for the best.

Thank you all for your kind words. My prayers are with you all everyday.

Hi All,
Just wanted to update and say my prayers are with you all.
I am now tapering my pred. I am at 9mg per day for the next month. Dr wants to get me off pred asap. Overall I am not so sure the pred was the wonder drug I had hoped for. I did get some relief but it seemed marginal. I will of course take any relief I can get.

I thought I would remain on a low dose for life until a week or so ago I got some really bad new from my Rheumatologist. She sent me for a Dexa scan and the results were horrible. I was told my number is -3.58. As the scale only goes to -4 my bones must be extremely brittle. On top of my other problems I now worry constantly about falling and breaking my hip.

Thanks for listening