1. < Autoimmune Diseases

Ankylosing Spondylitis + Osteoporosis

Posted by tspoon3 @tspoon3, Jun 23, 2019

Hi, a friend recommended this discussion group to me but I did not see people with Ankylosing Spondylitis listed separately. I would love to discuss this condition with others who may be experiencing the same things. I also have Osteoporosis together with the AS. I am working very hard to address both conditions through food, infection identification, gut, homones, toxins and stress management (exercise and meditation). Yikes, it can be overwhelming! Does this sound like anybody else???

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

lioness | @lioness | Sep 16, 2019
In reply to @anniebrook "I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between..." + (show)
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

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@anniebrook You sound like me . I hurt from shoulders to low back also my legs are weak. I think I have A.S. although the Dr. has given me very little information. I do think I'm changing Dr.s as there is no rheumatologist in there plan but love my pain Dr. so am going to have to investigate to see what I can find. Wishing you well Let me know what you find out . We all care her .

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alrod | @alrod | Sep 16, 2019
In reply to @anniebrook "I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between..." + (show)
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

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Hi anniebrook! Sounds like you have been on a very long road and are getting weary. AS is a systemic autoimmune disease, and it sounds like it has not been addressed as such. In other words, if you have AS, it can get very frustrating treating the individual symptoms and neglecting the actual systemic cause of most of your pain. I definitely would suggest a rheumatologist. He/she can truly evaluate you and make a definitive diagnosis. After that, there are a number of ways AS can be addressed and finding the best one for you should help alleviate your overall pain and discomfort issues. I am being treated by both a rheumatologist and a pain management specialist. Without treatment, I am unable to stand erect, must walk with a cane, and must endure constant debilitating pain. My regimen includes a Remicade infusion every 6 weeks, Lyrica b.i.d. to address the fibro issues as well as the AS, occasional very low dose (under 5 mg) prednisone for flares (all from my rheumatologist), morphine sulfate ER 15 mg b.i.d. ( a very low dose, I am told) and multiple breakthrough meds as needed. With this regimen, I do extremely well and can do most anything I want. I would encourage you to find a rheumatologist who has a strong AS treatment background as well as a pain management specialist who also understands AS well. With the right regimen from these docs, you truly can find a much more comfortable and manageable life. Good luck and please let us know how you are progressing. Blessings! alrod

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 16, 2019
In reply to @anniebrook "I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between..." + (show)
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

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@anniebrook Sounds like you’ve been on a long, rough road. You mentioned a pain doctor, but what other doctors are you seeing? Have you mentioned the problems with taking a long flight to your primary doctor? What does he/she say about managing the pain?

REPLY
msstoppainnagginme | @msstoppainnagginme | Oct 16, 2019
In reply to @anniebrook "I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between..." + (show)
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

Jump to this post

Can she go see a Neurologist that sounds more like Sciatica or Nerve pain. I got My husband into seeing a Neurologist & they gave him generic Lyrica/pregablin for the nerve pain feet back legs etc. Maybe try a Neurologist 1st.

REPLY
michelle1970 | @michelle1970 | Dec 8, 2023
In reply to @brie "Hello. I was diagnosed with A.S back in 2010 and continue to learn about this illness..." + (show)
@brie

Hello. I was diagnosed with A.S back in 2010 and continue to learn about this illness as my symptoms progress. Lately I've been experiencing loss of feeling in my legs, extreme fatigue, pain and swelling in my joints and spine, and overall weakness. I've ran a low grade fever, and upset stomach. I've been miserable. Of course it is the change of seasons too where I am at. This always kicks me into a flare up.

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Do they have you on anything? The fatigue was my worst symptom at first then the walking etc. I am on Humara. It's been doing pretty well. Took awhile to really help but it is

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