Can Ankylosing Spondylitis Cause Arm Pain?

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Alex ArmPain
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Date Joined Mar 2018
Total Posts : 29
   Posted 8/15/2018 11:15 PM (GMT -6)   
I've been suffering from finger, forearm, elbow, and shoulder pain for nearly two years now, and still nobody knows what's causing it. My full explanation on my symptoms is in this thread: /www.healingwell.com/community/default.aspx?f=24&m=4022309&r=x

Recently, my symptoms got even worse, to the point where I can't even work. I'm currently on short term disability and off of work for 3 months while I try to find out what's happening to me.

The thing is, my rheumatologist suddenly thinks the cause is Ankylosing Spondylitis. He says he saw inflammation on my lower spine via an x-ray I had a couple of months ago, and that could be the reason my arm tendons are so painful. I'm no doctor, but I have absolutely no idea why he thinks this. I've never even heard of a correlation between spondylitis and arm pain, and when I ask him about it, he either dodges the question or says something I don't understand. So now he wants to infuse me with biologics and give me physical therapy for my back and shoulders.

Does this make any sense to anybody else? My acupuncture specialist seems to think so, but I'm skeptical on basically everything he says, considering his treatments haven't exactly helped me so far. I'd go to another rheumatologist for a second opinion, but I don't think I can do that, because my current doctor is the only reason I'm able to take this much needed time off of work, so I may have no choice but to believe him and go along with the treatment.

Chutz
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   Posted 8/15/2018 11:41 PM (GMT -6)   
Hi Alex,

I did some reading and what I read was that about 1/2 of the people with spondylitis have arm pain. Anywhere that tendons attach to bone can be affected/swollen and cause pain. I don't have experience with it, this is just the things I've read. Seems the lower back is one of the first places it's felt which would go along with what your doctor was saying. Do a search and some reading to see if you can make more sense of all of this. Careful of the sites you use. I look for .nih, .edu, webmd are all reputable sites.

Your doc does need to do a much better job of explaining things to you, though. It sounds like he needs to retire since he's forgotten that you are a person sitting there and not an income. (sorry, my attitude is showing)

Warmly,
Chutz
Moderator: Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia
Conditions: Fibromyalgia, Chronic pain, IDDM (diabetes). Ulcerative Colitis, Osteoarthritis, Degenerative Disk Disease, Depression, Chronic Fatigue Syndrome, PTSD and others trying to mess up life.
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The microwave oven is the consolation prize in our struggle to understand physics. ~Jason Love

Alex ArmPain
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Date Joined Mar 2018
Total Posts : 29
   Posted 8/16/2018 1:28 AM (GMT -6)   
Well, another problem is that I don't have lower back pain, and my arm pain originally started at my fingers, then progressed to my elbows, and finally my shoulders and upper back. I'm not sure if it works that way, but I'll be sure to ask my doctor at my next appointment.

Thanks for responding though, it's good to know that it's at least somewhat possible that I'm not somehow being misdiagnosed. I'm pretty paranoid about that sort of thing after nearly two years of nobody knowing what's happening.

Oh, I also forgot to mention that, when I exert my arms too much, I experience some muscle twitching near my elbows as well. The rheumatologist said that's a symptom of spondylitis too.

Post Edited (Alex ArmPain) : 8/16/2018 12:43:41 AM (GMT-6)


Darla
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   Posted 8/16/2018 11:53 AM (GMT -6)   
Hi Alex ArmPain,
These Dr's are a Chronic Pain! I just wanted to suggest you ask about a neck MRI. I had three surgeries for similar issues (carpal tunnel again, ulnar nerve release again and a cubital something and I am prett sure they could have been avoided if a neck MRI had been done first, as I had extensive damage to my neck from arthritis. That can cause the same issues you are describing and an easy test. Good luck!

(Seashell)
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Date Joined Dec 2012
Total Posts : 894
   Posted 8/16/2018 12:16 PM (GMT -6)   
Alex:
Spondolysis is not reserved solely to the lumbar spine.

Forward displacement of one vertebrae in relation to another can be present at any level of the vertebral column. The lumbar spine is more common to spondolysis due to the natural lordosis curvature which promotes forward migration.

Ankylosis spondolysis is a specific auto-immune condition of rheumatoid etiology. It is more common in males. It involves heightened inflammatory processes that cause the tendons (muscle to bone attachment) and ligaments (muscle to muscle) to become stiff and rigid in a migratory progression up and down the vertebral column . It is sometimes referred to as “stiffman’s syndrome.”

Tingling and intermittent numbness and muscle twitching suggest transient interruption of either or both sensory or motor impulses. Not all symptoms warrant surgery. In fact, surgery can unleash troubling inflammation due to the trauma of surgery. Surgery should always be a cautious and thoughtful decision.

The body, in its original design, is amazing and not to be taken lightly in its natural healing abilities and ability to adjust and adapt as we age and change.

If your symptoms concern you, make inquiries to find a competent primary care, rheumatologist, or physician of functional medicine as a starting point.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 8/16/2018 1:40 PM (GMT -6)   
Darla said...
Hi Alex ArmPain,
These Dr's are a Chronic Pain! I just wanted to suggest you ask about a neck MRI. I had three surgeries for similar issues (carpal tunnel again, ulnar nerve release again and a cubital something and I am prett sure they could have been avoided if a neck MRI had been done first, as I had extensive damage to my neck from arthritis. That can cause the same issues you are describing and an easy test. Good luck!


I had a neck MRI last year, and unfortunately they found nothing. So far, I've had some back x-rays, ultrasounds of my arms, and MRI's of my neck and left elbow. The x-rays mostly showed nothing (except what I've already mentioned), the ultrasounds didn't detect any inflammation, and the elbow MRI apparently showed mild tendinosis, though the orthopedic surgeon didn't seem to think it was enough to cause the problems I'm experiencing.

Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/17/2018 5:49 AM (GMT -6)   
OK, just wanted to suggest that but you have done it. Very frustrating to not have the cause (and subsequent treatment) of pain.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 894
   Posted 8/17/2018 10:05 AM (GMT -6)   
Alex:
Ankylosing Spondylosis in its earliest stages, is able to be detected by MRI. Early stage Ankylosing Spondylosis will be less evident on x-ray or CT. As the condition progresses over time, diagnosis is more straightforward partly owing to observable changes in posture and range of motion.

Heightened markers of inflammation in blood work are part of the diagnostic work-up. A faulty gene is at play for a sub-group of men with the condition.

At its core, Ankylosing spondylosis is an auto-immune condition. Diagnosis of auto-immune conditions is typically a process that evolves over time/months rather than a single test or single measure.

Above all, keep moving. Slow, gentle movement through the full arc of motion of the area of body or joints affected. Keep moving. It can be hard to be motivated to move when a joint is painful, but lack of movement or a sedentary lifestyle will exacerbate stiffness and rigidity. Use local cool compresses and ice packs.

Keep partnering with your medical team until you feel that your symptoms have been understood and identified.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Sherrine
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Date Joined Apr 2005
Total Posts : 17897
   Posted 8/17/2018 5:22 PM (GMT -6)   
Alex, I have ankylosing spondylitis and I am having arm pain. My upper arm has been bothering me for a while but my shoulder got involved on Monday. I picked up a Pepsi Cube and got screaming pain down my arm. I had to have a cortisone injection in my shoulder to knock out some of the inflammation. But my arm pain I believe was from things I have done...like lifting the Pepsi.

When I was first hit with AS, I had pain in my hips, sacroiliitis, and pain running down the inside of my legs down to the middle of my calves. I almost couldn’t walk. I’m fine now after being put on proper medication.
I also have carpal tunnel and that might be how your arm pain started out. It also affected my elbows.

Lastly. I get iritis which is the inflammation of the iris of the eyes. I didn’t know that could be caused by AS also. I have Crohn’s disease and that illness can cause iritis too.

But here is a good link from the Spondylitis organization that shows what AS can affect. This might be helpful to you and also be an eye opener.

/www.spondylitis.org/Possible-Complications

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 8/17/2018 6:30 PM (GMT -6)   
I don't think I had carpal tunnel when this started. That was the first thing I thought I had, and I had multiple tests and treatments for it, all of which came up with nothing. I've also had some cortisone shots in my arms, and they've almost never helped. Only once did one of those shots actually do something, and that's when I got one near my elbow, which eliminated a pain spot near my wrist. Since then, they've done nothing, even when I got four of them in my back last month. I should also mention that doctors haven't found any noticeable swelling, and I haven't lost any strength (I think) or mobility, it's all just pain.

Also, that article doesn't seem to mention arm pain, and neither does any other article I've found thus far, which is partially why I'm so confused about my doctor's sudden change in diagnosis. He originally said that my back is stiff because I'm missing a vertebrae, but now, months later, he claims it's because of inflammation. I've been prescribed many, many anti-inflammatories over the course of these two years, and none of them have done anything yet. Now he wants to put me on enbral, which I've heard is some pretty serious stuff.

Sherrine
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Date Joined Apr 2005
Total Posts : 17897
   Posted 8/17/2018 8:01 PM (GMT -6)   
The article shows wrist, fingers, and shoulder. There are a lot of nerves in your shoulder that can affect the arm. I inflamed my shoulder and my bicep was /is hurting. I didn’t lose strength. The doctor checked that. If I had lost strength it might have meant I tore a ligament.

Anyway, this is the best I can do to help you. Sometimes we have things that happen that doctors can’t figure out. I hope you do get answers soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 8/18/2018 12:34:16 AM (GMT-6)


Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 8/20/2018 1:35 PM (GMT -6)   
In any case, I really hope I've finally been diagnosed correctly this time. Though I do have one more question: assuming the diagnosis is correct, would that mean the pain is a direct result of something wrong elsewhere in my body, or would there still be direct damage to my arms, thus necessitating a separate healing process for them? I'm hoping it's the former, because I hear long-term arm problems can take a long time and a lot of rest to heal, and I don't think I'd be able to get the time and rest I'd probably need.

straydog
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Date Joined Feb 2003
Total Posts : 16804
   Posted 8/20/2018 2:46 PM (GMT -6)   
Alex, if the rheummie is positive this is AS, I believe you mentioned previously he had spoken about trying you on Enbrel. Enbrel is a medication used to treat AS. If this in fact AS, hopefully the Enbrel will take care of things. Keep in mind, not every medication is a one size fit all type of thing. You may have to try a different medication in the Enbrel class. Everything will depend on how well your symptom are controlled by medication.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 8/20/2018 4:40 PM (GMT -6)   
Well, another factor that makes me skeptical is that I had a blood test for auto-immune diseases a few months ago, and it came up negative. And I've looked up the side effects and dangers of biologics, and they make me really cautious about trying something that extreme.

I wish I at least had the presence of mind to get a second opinion from another rheumatologist before I went on short term disability. I'm not sure they'd still allow me to do that at this point. I still can't even find any info on instances of spondylitis causing the symptoms I have (sources would be appreciated, if anyone has some), and many of the symptoms I do hear about are ones that I don't experience.

Oh right, I'm also concerned that my arms are being affected by tendinosis, and I'm also being told to take anti-inflammatories and biologics that prevent inflammation. But I've heard that this can significantly slow tendon healing. So if I'm being misdiagnosed, couldn't the treatment potentially make things worse?

Post Edited (Alex ArmPain) : 8/20/2018 5:22:32 PM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 16804
   Posted 8/20/2018 8:08 PM (GMT -6)   
Alex, as an outsider looking in, I see a lot of doubt in your posts. Don't get me wrong, there is nothing wrong with that at all. I generally go with gut feeling on things. If I were in your shoes, I would first thing tomorrow contact my PCP for an appt & be seen for a 2nd opinion with another rheumatologist. It never hurts to get another opinion. By getting a 2nd opinion does not mean that you are switching drs. That should not affect your short term disability, why would it.

NSAIDS are the first line of treatment for AS, if those fail to improve the symptoms then biologics are often brought into the picture. What dr said your arm pain is tendonitis? Any medication, including the bios all come with potential side effects. By law they are required to list the potential side effects. That does not mean every person will have a side effect. AS does not present it's self in one particular way, everyone is different.

I urge you to get a second opinion asap.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alex ArmPain
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Date Joined Mar 2018
Total Posts : 29
   Posted 8/20/2018 9:24 PM (GMT -6)   
Sorry, I'm not doubtful because I don't trust you guys, I appreciate any and all input on this subject. I've just become really skeptical and cautious after nearly two years of incorrect diagnoses and failed treatments. Plus, I've finally reached a point where, if I can't figure this out and at least get partially treated over the next few months, I'll likely lose my job, since my current pain level is much too high to work.

Unfortunately, as of recently I no longer have a PCP, she recently moved away from the practice she was working at. Another doctor recently referred me to a different rheumatology group, but they're not taking new patients for another two months, so that idea went out the window quickly. I'm actually not sure if I necessarily need a referral to see a rheumatologist. If so, it'll definitely take more time than I'd like to get a second opinion.

An orthopedic surgeon said he saw some mild tendinosis (not tendinitis, apparently they're different) in my left elbow, though he later said that it was mild in the sense that it's just normal degradation over time as somebody ages, so I'm not sure why he'd even point it out as an abnormality in the first place. He sent me to therapy for it for about a month and a half, but nothing really happened as a result of that.

I know that every drug has potential side effects, but the ones I've heard of for enbrel are considerably scarier than most, and I'll need to ask my doctor how likely he thinks they are to occur. I've also been put on 150 mg of indomethacin a day, but I don't know if it's doing anything. Might be too early to tell, though I'm not feeling optimistic.

straydog
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Date Joined Feb 2003
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   Posted 8/21/2018 8:29 AM (GMT -6)   
Alex, I looked up tendinosis & read some excellent information at the Cleveland Clinic's website. Prior to that I read an article at NIH as well. I understand the misdiagnosis & being somewhat skeptical. I would opt for another opinion.

Two things you can do is look on your insurance plan to see what rheumatologist are listed on your plan. Check out their websites, as most now have them. Call & find out if you need a referral, most insurance companies require a referral from another dr.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alex ArmPain
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Date Joined Mar 2018
Total Posts : 29
   Posted 9/7/2018 8:53 PM (GMT -6)   
Had a followup with my rheumatologist, and I'm a bit more convinced this time. This is the first time a doctor has given me any sort of scan and then come back with a result that could lead to an actual reason for how my body could fail in so many ways.

Speaking of which, I got an MRI of my lower back, and apparently there are some protruding discs at vertebrae L4 and L5. Not 100% sure what that means, but they've said it it could be what's causing at least some of my pain, though they're not totally sure. I'm getting an epidural injection on Monday for this, so hopefully that'll help at least somewhat. I've also asked for another scan of my upper spine, to see if there's anything like that up there. If so, maybe that would be a potential cause of my arm pain? I guess?

The problem with this is that, until this is sorted, I can't take my enbrel. I don't know if the injection(s) or the enbrel are the answer; to my understanding, if it's the former, this will be sorted out much faster than I thought, but if it's the latter, I might not be feeling better by the time I need to be returning to work, and also I'd probably end up on the stuff for a long time.

Alex ArmPain
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Date Joined Mar 2018
Total Posts : 29
   Posted 9/20/2018 1:47 AM (GMT -6)   
So... that epidural injection isn't actually supposed to happen until mid-October, and on top of that, the doctor at the pain & wellness center who'll be giving it to me looked at the spine MRI and doesn't understand why my rheumatologist thinks I have spondylitis (or as they're calling it now, peripheral spondyloarthritis). I looked the guy up, and he seems like somebody who would know what he's talking about, meaning I now have two very experienced spine specialists that completely disagree with each other about my condition. I'm starting to think I should go get a third opinion from another rheumatologist like I nearly did before, though I really don't know who I should see or who could refer me.

I'm no doctor, but at this point, it feels like it kind of needs to be either some specific problem in my upper spine, or spondylitis like my rheumatologist says. I'm on my third enbrel shot, and I haven't noticed any effects yet, but I hear it takes several weeks for that stuff to actually take effect, so I probably shouldn't jump the gun and assume it's not working as of now. I also got additional x-rays of my upper back to see if there's evidence of something else wrong, and if there is, I'll get an MRI for a more detailed look that will hopefully point to something useful. If nothing comes of that either, then... I'm pretty much out of ideas.

straydog
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Date Joined Feb 2003
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   Posted 9/20/2018 7:15 AM (GMT -6)   
Alex, have you discussed this with the rheumatologist? If not, I would be contacting him. Getting a referral for another opinion should not be an issue. Get an appointment with your primary care dr & explain your situation & he can take care of this for you.

Don’t give up Enbrel just yet give it some more time.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 9/20/2018 11:14 AM (GMT -6)   
Yeah, I have an appointment with them tomorrow, I'll be sure to discuss this with them.

Also, they just got back to me with my x-ray results, as well as a re-examination of an MRI of my neck from last year. They saw something up with my lumbar spine on the x-rays, but also, they saw a bulged disc in my neck. They say they don't think it's affecting any nerves, but I'll definitely be talking to them about this tomorrow, because that still sounds important.

straydog
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Date Joined Feb 2003
Total Posts : 16804
   Posted 9/21/2018 1:33 PM (GMT -6)   
Alex, did the second dr think an epidural would be the appropriate for you? In most instances here, when a member has a lumbar epidural it is for the lower extremities, cervical epidural for upper extremities. This is why I am asking, if I remember correctly, all of your symptoms are in the upper area.

Let us know how the dr appt works out today.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alex ArmPain
Regular Member


Date Joined Mar 2018
Total Posts : 29
   Posted 9/21/2018 4:08 PM (GMT -6)   
Well, they did refer me to another rheumatologist, so I'll be getting another opinion pretty soon. I'm not sure how they're expecting a lower spine epidural to help anything other than possibly my legs, but they still seem to want me to get it.

The problem is, I now want the epidural for my neck. Even though they didn't see any evidence of stenosis in my neck as a result of the bulged disc, I want to try it anyway just in case they're somehow wrong. However, the group that administers these shots would need a more recent neck MRI to use, since my last one is from over a year ago, and getting a new one would require me to wait weeks to see one of their doctors again for a referral, plus around $600 for the scan itself. And even then, I'd have to schedule the actual injection for anything they find over a month in advance.

So basically, getting treatment for this potential neck problem would be expensive, time consuming, and not even guaranteed to work. Not so sure I should go down this path until I've had another doctor give their opinion.

Oh, and to answer your question, the second doctor (the one who would be administering the shot) seemed to think the lower spine epidural would help my legs, which is why I may still go through with it. The only thing making me hesitate is that it would make me have to put off taking my enbrel for two weeks.

Post Edited (Alex ArmPain) : 9/23/2018 10:44:59 AM (GMT-6)

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