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#520106 - 04/07/20 04:48 PM Treatment Expectations
Andrew333 Offline
New_Member

Registered: 04/07/20
Posts: 4
Hi everyone,

This is my first post. I'm not sure if I have AS yet, but I've had back pain everyday for the last 8 months. It started after I had spent a few days in a crouched/squatting position, working on my car (wheel area). I noticed during the process that my back was becoming sore and standing upright was difficult, but I had to finish it up before leaving for school. After I had finished I noticed there was intense aching pain throughout my waist region that would get worse the longer I sat. Sometimes this pain would go down to my calf and I questioned whether I could walk after standing up on a couple occasions. After 3 months of this pain, I started putting my jacket behind my lumbar and after a week the pain disappeared. The only time it would return was once doing bodyweight squats and another time doing crunches on a pullup bar by bringing my knees up repeatedly.

However, with the waist-area pain gone, I noticed a tightness in my lower back. I had trouble getting my socks on and tying my shoes was uncomfortable. That was over 4 months ago and the tightness is still there. Every morning it's at its worst with sharp pain between some vertebrae along with the lower back tightness. If I push between certain vertebrae it relieves the tightness, but my range of motion has not improved since I first noticed it. When I lay on my back for a while, once I move my lower back tightness and pain makes itself present again.

I went to the doctor back in December, 4 months after the initial pain began and was given a Rx for an x ray and PT. I got the x ray done a few months later (mid March) because I had to return to school. The only thing noted on the x ray was 'mild disc degeneration' at L5-S1, but my doctor put in a request for an MRI, which I will get when the semester's over.

So, I've spent the last few months reading everything I could on AS and other back-related diseases, including people's personal stories about how it began for them. I kept coming to the conclusion that it did not sound exactly like AS because:

The pain never wakes me up.

The pain is not bad, the sharp pain between vertebrae is probably the worst.

Lying still is more comfortable than moving because moving in certain ways aggravates the tight muscles and painful vertebrae. I feel no pain at all lying still.

I don't get night sweats.

I'm 37, which doesn't rule it out but makes it a little less likely than if I was in my 20s.

What I should mention:
I have autoimmune diseases already (vitiligo, thyroid disease, and POTS).

My dad's side of the family has autoimmune disease. My dad has UC along with UC related arthritis in his SI joints. His dad developed UC in his final years. His sister has RA.

I had a month long case of costochondritis 4 years ago and had to keep myself from sneezing that whole time due to the pain.

At this stage, the most defeating thing for me is struggling to get my socks on, along with all the other issues that I have with my limited range of motion. It causes a bad start to my day. My question is, if I do have AS and I get on medication, can I expect my range of motion to return? Has anyone personally found that to be the case? That alone would improve the state of mind I'm currently in greatly.

Anyway, hope this wasn't too long. I know no one here can diagnose me, but any similar stories would be welcome and of course, let me know if range of motion is improved by medication.

Thanks


Edited by Andrew333 (04/07/20 04:49 PM)

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#520107 - 04/07/20 04:56 PM Re: Treatment Expectations [Re: Andrew333]
Andrew333 Offline
New_Member

Registered: 04/07/20
Posts: 4
Also, what would be my wisest choice given my current symptoms; start with seeing an orthopedist, or a rheumatologist? Currently, I'm working with a GP.

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#520109 - 04/07/20 09:24 PM Re: Treatment Expectations [Re: Andrew333]
mulehound Offline
Decorated_AS_Kicker

Registered: 04/27/09
Posts: 711
Loc: USA state of Utah
I found out I had AS when I was in my late 40's. Lower back pain could hardly tie my shoes. Missed weeks of work. I was diagnosed by a back Doctor. He said get ready to be crippled. Then he told me on the way out of his office "stop eating starch". My GP wanted me to start humira plus numerous other medications. I was at a loss, did not know what to do. My cousin was on humira among other things for skeleton issues. He was not diagnosed with AS.
I found this site and many great people. Some were having great success with modern medicine and medication. I went hard NSD. John, kiwi,and numerous others helped me out. They have me hope, where all I found was despair.
This place became my AS Family. I was here a lot asking a ton of questions.
A year after being on NSD, head rheumatologist at the University of Utah declared I was in remission. Advised me to stay the course.
I was able to ride, hike etc. You can read all my past posts.
I would find out if you have the HLAB27 Gene and start from there.
ETTE
Darrel
Good luck

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#520111 - 04/07/20 09:31 PM Re: Treatment Expectations [Re: Andrew333]
DavidP Offline
Master_Sergeant_AS_Kicker

Registered: 09/24/07
Posts: 607
Loc: Sale, Victoria, Australia
Hi Andrew,
I had a form of costochohdritis - inflammation of the manubrio-sternal joint (which is a synovial Joint). But it lasted for years and started way before I was diagnosed with an undifferentiated spondlyloarthropathy. In retrospect I should have recognised it as red flag as now I know at least 40 percent of sufferers get that.
That it went away counts in your favour. I think chiropractic / osteopathic would be worth considering - with caution.
Regards David
_________________________
Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.

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#520112 - 04/07/20 10:41 PM Re: Treatment Expectations [Re: Andrew333]
Andrew333 Offline
New_Member

Registered: 04/07/20
Posts: 4
Thanks a lot for the responses, I appreciate it. Mulehound, that's great news that the diet has helped you so much. I've read about it and of course will consider it if things continue for me. You mention struggling to tie your shoes; was it due to lack of range of motion or just due to pain? If it was range of motion, have you gotten it back?

DavidP, is the costochondritis the worst of your symptoms? How's your spine feel? I'm hesitant to visit a chiropractic, I've just heard too many warn against it. Plus, I feel like my spine would hurt like hell if I did because of those pain spots between the vertebrae.

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#520113 - 04/08/20 04:36 AM Re: Treatment Expectations [Re: Andrew333]
DavidP Offline
Master_Sergeant_AS_Kicker

Registered: 09/24/07
Posts: 607
Loc: Sale, Victoria, Australia
Hi Andrew,
I only mentioned chiropractic given there is a chance you don't have AS and that pain / mobility issues stem from the slightly degenerated L4 / L5 / S1 region. That region is one of the most common sites for postural based back issues - and in that case chiropractic might help. I'm sure they would get an initial set of X-rays which would show any obvious fusion, and you could ask them to treat conservatively to begin with and just see how it goes.
_________________________
Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.

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#520114 - 04/08/20 09:04 AM Re: Treatment Expectations [Re: Andrew333]
Dotyisle Offline


Registered: 03/07/02
Posts: 9494
Loc: Rosario, Argentina
Hello Andrew,

From my personal experience and early symptoms, they are very different from yours. My initial pain was in SI joints and low back... morning stiffness in low back was every day and if I slept on SI joint that was inflamed (first was left side... couple years later right side) I had trouble getting out of bed in morning.

When I was diagnosed I had evidence of fusion in joints (SI and low back) and was HLA-B27 positive.

I was very athletic playing lots of basketball, swimming and also doing circuit weight training. I have also experienced muscle tightness pre and post AS from exercise... sometimes for long periods of time. Typically this is from over doing it... maybe with work on car this is what you are experiencing?

When I have this type of muscle pain, I see sports medicine/physical therapists. I have excellent one here in Rosario (Argentina) that helped me with some back pain between shoulder blades when overdid it with swimming and then middle back pain from exercising.

My back had a lot of knots that he worked out the knots some, then gave me some stretches to perform daily 3 rotations of 15 reps. After couple of days felt improvement and after 2-3 weeks most of tightness gone. After month would return to more normal activities, but I also keep up the new exercise but only 1 rotation of 15 reps as maintenance.

Continue to work with your doctors, just passing along my experience in case it helps.

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#520115 - 04/08/20 01:54 PM Re: Treatment Expectations [Re: Andrew333]
Andrew333 Offline
New_Member

Registered: 04/07/20
Posts: 4
I appreciate you sharing, Tim. How are you treating your AS? My pain initially started out like yours in that my pain was all focused in the SI region. I sometimes wonder if the 3 months of SI pain I had was the fusion process and perhaps why I have this decreased range of motion now. I'm not entirely sure if SI joints showed up on my x ray, though. It was a lumbosacral x ray.

I took an aleve today and there is great reduction in the pain. Not sure if that's indicative of anything. I also scheduled my rheumatologist appointment today. Looks like it'll be a 3 1/2 month wait. I guess I should continue to work with my GP in the meantime, at least there's an MRI request put in, even if it's only the lumbar region. Maybe I could ask him to test for HLA B27, ESR and CRP.

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#520117 - 04/09/20 02:20 PM Re: Treatment Expectations [Re: Andrew333]
Dotyisle Offline


Registered: 03/07/02
Posts: 9494
Loc: Rosario, Argentina
Hello Andrew,

If they can see fusion on x-ray/MRI that would solidify AS diagnosis most likely. I was finally tested by rhuemy and was HLA B-27 positive. I also have family history as my dad had AS, was totally fused neck and spine.

I follow the No Starch Diet as my mainstay since March 2002. Prior I did very well with azulfadine and naproxen... azulfadine was my miracle drug... but caught up with my liver after 7 years of doing well on it.

I believe eating/living healthy really helps. I only drink alcohol 1x/month at most, no more sodas/fruit juices high in sugar or other artificial substitutes and no processed foods. My strong belief now is garbage in/garbage out when it comes to what we eat.

I also incorporate probiotics... eat sauerkraut (natural with only cabbage, salt, water), yogurt (organic) and Kefir (wife makes it). This is to help heal my GI tract. Prior did 3 day apple fast couple times a year... now a do weekly fast on Fridays and do not eat until supper and then it is only fruit and veggies to keep it light. Typically also eat some raw garlic (1/4 of individual slice) 1x/week to reset intestines.. garlic is naturals best antibiotic.

Now I can eat some starch... first was some more starchy nuts and veggies. Now in last year have been eating some more easily digested rices. Now I can eat 3-4 spoonfuls 3x/week and I am still not having any stiffness following.

I also stretch at least once daily and try to do twice if I can (morning and evening). Typically with matt in front of TV. Typically 20+ minutes to go through all the stretches. I find this to be very important... if I skip for 2-3 days I can feel a bit more stiff/tight. But this could be just human nature as have a lot of coworkers/friends/family that complain of small aches as they do not exercise/stretch at all.

Takes a lot of discipline.. thankfully that is one of my strong suits.

This experience will be a journey... there is not one right answer and may take some time as you learn what helps and what does not. Keep on asking questions if you have them.

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#520133 - 04/12/20 10:01 PM Re: Treatment Expectations [Re: Andrew333]
ynot Offline
Member

Registered: 10/01/14
Posts: 28
Andrew, I have had both AS back pain and mechanical back pain most of my life. There is a definite difference in the symptoms. The AS pain was dull pain that worsened when resting, while mechanical pain was stabbing and worsened with activity. I have always had a high pain tolerance, so the AS pain was not debilitating for me, although it made sleeping difficult at times. Muscle stiffness was also a problem, and like you, putting on socks and shoes was a chore. On average, I would have 3 or 4 bouts of mechanical pain a year. It would usually start when I bent over to pick up something, or be twisting around while working in a tight place. This pain was a sharp 10+ and I would not be able to even get out of bed without debilitating pain for a couple weeks. This was difficult because if I found a position that relieved some of the sharp pain, the AS pain would work its way into the resting position. Balancing the 2 different pains was an impossible task.

I wrote above about my pain & symptoms in past tense because I have not had either AS or mechanical back pain for over 5 years and counting. I have some stiffness from bone fusion, but I no longer have a problem putting on shoes and socks. I do push-ups as soon as I get out of bed in the morning and before bedtime at night.

What I did 5 years ago was to adopt a low starch diet, and I think the most important thing I did was to make sure I kept well hydrated. It is known that dehydration causes muscle rigidity and can contribute to lower back pain. I make sure I drink 2 PowerAde Zeros every day and more water. It is hard in the colder months to drink so much, but when I cut back I really notice it a few days later. I know this is not scientific, but I have several non AS friends that had been plagued with chronic back pain. They had tried almost everything to stop the pain. When I told them about hydration, they too started the PowerAdes and water. They have all old me that their pain is substantially less or gone.

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