1. < Autoimmune Diseases

My wife has autoimmune disease. She has inflammation in legs and arms.

Posted by twinsgyros @twinsgyros, Apr 25, 2023

Does autoimmune disease (Sjogrens, Lupus, Hashimotos) cause pain and inflammation in groin, legs, arms and shoulders ? She has had every image (1 xray, 5 MRIs and a bone scan) taken and has seen her primary, an orthopedic surgeon, ER doctors, rheumatologist. My wife has seen her rheumatologist and she ruled out PMR after one steroid regimen. Blood tests did show very high sed rate and creatine levels. She was finally referred to a pain management doctor along with his neurologist. They have ruled out any musculoskeletal and referred her back to her rheumatologist.

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twinsgyros | @twinsgyros | Apr 27, 2023
In reply to @becsbuddy "@sgp21 I just hate to hear of someone having pain all the time. What do you..." + (show)
@becsbuddy

@sgp21 I just hate to hear of someone having pain all the time. What do you do on a daily basis to manage the pain? The Arthritis Foundation should be a good resource for you
https://www.arthritis.org/treatments
No one should have untreated pain!
Have you had some good conversations about your pain with your doctor?
Will you please let me know what your doctor says and does?

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Please note: Yes, we have had good discussions. We have been seeing this rheumatologist for years. As I previously remarked to another member of our group: Won't be seeing the rheumatologist. She replied via portal that my wife's options would possibly be, ironically, go to the Mayo Clinic or John's Hopkins. Impossible for us at this time as I am going through cancer treatments and we are the caregivers for my disabled step-son. Feeling like she believes there is nothing really wrong. Jeesh.

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covidstinks2023 | @covidstinks2023 | Apr 27, 2023
In reply to @twinsgyros "Thanks for thoughts and prayers. We have faith. Did see that doctor's provide prescription calcium and..." + (show)
@twinsgyros

Thanks for thoughts and prayers. We have faith. Did see that doctor's provide prescription calcium and vitamin D to offset effects of long term prednisone usage.

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I've never heard of that, so, thank you so much. This website is wonderful as we can give each other our thoughts and what helps and what doesn't. God Bless You!

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1 reply
twinsgyros | @twinsgyros | Apr 27, 2023
In reply to @covidstinks2023 "I've never heard of that, so, thank you so much. This website is wonderful as we..." + (show)
@covidstinks2023

I've never heard of that, so, thank you so much. This website is wonderful as we can give each other our thoughts and what helps and what doesn't. God Bless You!

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I agree. If you want more info just Google, "calcium and vitamin d to offset side effects of prednisone". Lots of reputable sources. I looked it up because I feared my wife had PMR and some PMR patients are on steroids for a long time. God Bless.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 27, 2023
In reply to @twinsgyros "Won't be seeing the rheumatologist. She replied via portal that my wife's options would possibly be,..." + (show)
@twinsgyros

Won't be seeing the rheumatologist. She replied via portal that my wife's options would possibly be, ironically, go to the Mayo Clinic or John's Hopkins. Impossible for us at this time as I am going through cancer treatments and we are the caregivers for my disabled step-son. Feeling like she believes there is nothing really wrong. Jeesh.

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@twinsgyros I certainly understand why you can’t go to Mayo or John’s Hopkins but there may be some choices nearer. The Mayo Clinic has a Care Network of hospitals all around the world.
There may be one in you state. Try this link:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Do you think this might be worth a try?

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1 reply
twinsgyros | @twinsgyros | Apr 28, 2023
In reply to @becsbuddy "@twinsgyros I certainly understand why you can’t go to Mayo or John’s Hopkins but there may..." + (show)
@becsbuddy

@twinsgyros I certainly understand why you can’t go to Mayo or John’s Hopkins but there may be some choices nearer. The Mayo Clinic has a Care Network of hospitals all around the world.
There may be one in you state. Try this link:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Do you think this might be worth a try?

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Thanks for the info. I had completely forgot about an affiliate just south of Knoxville ( 2 and half hr drive). Her rheumatologist (she has been a patient of hers for over 10 years) has had a change of heart when we told her the options offered were not viable. May have been some misunderstanding, but now she has told us not to give up and is requesting an appointment for reevaluation. I will keep your link, just in case. Very helpful. God Bless.

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covidstinks2023 | @covidstinks2023 | Apr 28, 2023

I am so sorry about the appointment with the rheumatologist being cancelled.
It's harder to be seen by a specialist quickly since Covid. I'm so glad she didnt have polymyalgia rheumatica. That's a hard disease. Have you searched under Google Scholar? There are boo coos of medical information that may shed some light on this. I'm so sorry you are battling cancer and also caregiver for your step-son. You have a heavy load. Praying fiercely for you & yours.

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1 reply
covidstinks2023 | @covidstinks2023 | Apr 28, 2023

I would say yes to your question. Hashitmotos is inflammatory as well as the other diseases she has. My endocrinologist said my thyroid diseases were possibly causing the osteoarthritis that I am getting all over. I also have Graves Disease as well & Fibromyalgia. The combination is painful. I see a rheumatologist next week as I mentioned before. Stay tuned....

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twinsgyros | @twinsgyros | Apr 28, 2023
In reply to @covidstinks2023 "I am so sorry about the appointment with the rheumatologist being cancelled. It's harder to be..." + (show)
@covidstinks2023

I am so sorry about the appointment with the rheumatologist being cancelled.
It's harder to be seen by a specialist quickly since Covid. I'm so glad she didnt have polymyalgia rheumatica. That's a hard disease. Have you searched under Google Scholar? There are boo coos of medical information that may shed some light on this. I'm so sorry you are battling cancer and also caregiver for your step-son. You have a heavy load. Praying fiercely for you & yours.

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Don't know if you saw, but prayers have helped. Rheumy has since replied positively and a new appointment has been scheduled for reevaluation. Yes, I have done extensive Dr. Google searches. Thoughts and prayers to you too, God Bless

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1 reply
covidstinks2023 | @covidstinks2023 | Apr 28, 2023
In reply to @twinsgyros "Don't know if you saw, but prayers have helped. Rheumy has since replied positively and a..." + (show)
@twinsgyros

Don't know if you saw, but prayers have helped. Rheumy has since replied positively and a new appointment has been scheduled for reevaluation. Yes, I have done extensive Dr. Google searches. Thoughts and prayers to you too, God Bless

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Amen. Will keep praying!

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oakwoman | @oakwoman | May 1, 2023

Sorry you have this pain. You have had CTscans, MRIs and xrays but have they taken a biopsy of the sore areas? I have EGPA short for Polyarteriris nodosa & Eosinophilic granulomatosis with polyangitis. Whew! thats why I use the short name. Basically this thing has sores and bumps on my lower extremities that are very painful and at times my feet feel like their haveing hot flashes with electric shocks.
I hope you find some one to help you, I'd stick with the Rheumatologist but be careful with prednisone as it has side effects. I took prednisone for Polymyalgia* for 18 months and ended up taking myself off of it because i gained nearly 30lbs and ended up with weakened muscles and bones, also new was High BP. So beware.

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