Author Topic: debilitating muscle spasms and pain  (Read 1550 times)

sixty

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Re: debilitating muscle spasms and pain
« Reply #15 on: May 15, 2021, 12:49:22 AM »
Is there anything that can be done for this issue of losing elasticity in one's organs, such as your lungs?  I'm currently trying to figure out what's causing my breathlessness with a pulmonary guy and a cardio guy.  My thoughts are it's the Sjogrens, or maybe I also have scleroderma.  Does anyone know if such a condition can be seen with a MRI or other test?  Then of course what can be done about it.  Probably nothing.  So frustrating and scary.  Thanks for any response!

Judie P

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Re: debilitating muscle spasms and pain
« Reply #16 on: May 15, 2021, 04:03:02 PM »
Good question, Sixty.  I have been diagnosed with COPD and no doctor nor my family or I can figure out how I got that.  My doctor looked it up and found that Sjogren's can cause it.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

sixty

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Re: debilitating muscle spasms and pain
« Reply #17 on: May 15, 2021, 04:09:44 PM »
Thanks Judy.  Sjogrens is an asshole!  Forgive the language.

Judie P

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Re: debilitating muscle spasms and pain
« Reply #18 on: May 18, 2021, 10:29:23 AM »
Seems a lot of Sjoggies are reading this, so let me tell you my results.  I finally saw my regular doctor yesterday.  He did some tests with my arm, and what he did caused no pain.  He told me that the rule at the medical center was to do MRIs only when a patient is getting an steroid injection or surgery.  He feels I am not close to surgery, but the injection is something I have to decide on.  It would also be silly to get an MRI when I had x-rays and MRIs on cervical and lumbar just a couple yeas ago.  We know what is going on, so why see it in images again.  I have severe degeneration in some of my C's cervically.  I have stenosis in my neck.  So, the first thing going on is a nerve problem in my neck.  Two, I probably do have a small tear in my rotator cuff.  In both instances, physical therapy is the treatment course.  I will be signing up today for that.  I will continue on Refalen, Gabapentin, and Baclofen for pain, swelling and muscle spasms.  I am ordered to take Vitamin D per day and just got my monthly shot of B12.  Should I decide on the injection, they will have to do an MRI to see where the shot needs to go in my neck.  Should I be in extreme pain, I have Norco I can take (10 pills prescribed by doctor).   If the physical therapy does not work, my doctor says it is time to see a neurosurgeon.  He emphasized that I do have Sjogren's and the muscle and joint pain is added due to my high stress level (about my business finances), having to put down a family cat (third one in a year), and thinking I am never going to get out of this pain for the rest of my life.

Sixty, we talked about the breathlessness again.  He is with you.  No reason for me to have COPD on the Western medical front except for Sjogren's.  He told me though he is not in the field of Sjogren care, his degree was in rheumatology, and he is loving helping me with the Sjogren's.

I hope this post has helped many of you out there.  Sjogren's sucks, but sometimes it has nothing to do with your symptoms, so please make sure you take the right steps to see a doctor when you need to.  What is the dumbest you can feel after seeing a doctor?  You find out it is Sjogren's but you are relieved because you have an answer.  Never let a doctor make you feel stupid or crazy.  It is their job to help you, not for you to help them.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

sixty

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Re: debilitating muscle spasms and pain
« Reply #19 on: May 18, 2021, 01:08:11 PM »
I'm so glad you shared your appointment with us Judy.  It helps to glean the experiences of others into some information. 

meirish

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Re: debilitating muscle spasms and pain
« Reply #20 on: May 18, 2021, 09:00:40 PM »
I have to tell you that I had an MRI 1 1/2 years ago of my cervical and upper thoracic area and did see my neurosurgeon for a second opinion. The scans did not show anything out of the ordinary. A couple of weeks ago  I had another MRI of the same area for an increase in the symptoms seen previously. This time I have discs about and below my fusion that are pressing some on the cord again.

The spine can be so crazy--I had the degenerative discs over the years also and stenosis can really be an issue. I n rotator cufever dreamed that they would cause as much pain as they do. Especially when pain is not always in the neck. Crazy---

I have heard those rotator cuff tears can be miserable. Hope they can get you some relief and avoid surgery.

I have avoided any pain meds by using heat alternating with cold. Mother nature is what I try to do to avoid taking any pain meds and so far positioning with small hand towels behind my neck and upper back along with the heat and cold and resting in my recliner will take the pain down enough to be tolerable. Of course, I am older than you and can adjust my schedule accordingly. I really hope that you can get things under control but do remember that it is so easy to blame things on stress. Stress has a place for blame but our illnesses can also be the cause though we hate having to deal with all the doc appt. revolving around the darned Sjogrens. Take time and energy. Good luck. meirish

jazzlover

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Re: debilitating muscle spasms and pain
« Reply #21 on: May 20, 2021, 11:07:37 AM »
Thanks for the info on the appointment. I hope you find a resolution that will help you.

I have joint pain all over the place and will ask my Dr about PT soon. Which joint first is the question! HA!

As for the lung issues, I'm having lots of trouble with breathlessness and not sure of the cause. I have MCAS which can cause it, as well as asthma and heart problems. I'm wondering about scleroderma myself. My uncle had it, so I know it's in the family, as are other AI diseases.

There's really no help for the lung issues from Sjogren's or Scleroderma??

Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease