New to the group, have a few questions

Posted by: pseudoguru

New to the group, have a few questions - 06/19/19 02:04 PM

Hello folks, I am new to the group. I dont yet have a confirmed AS diagnosis yet as I am waiting to see a rheumatologist (insane wait times in my state) but xrays do show mild sclerosis of both SI joints that could be an early change of sacroiliitis. I and have low back pain > 3 months + upper back pain for the last few weeks in the morning. HLA B27 is negative and CRP levels are normal but I know these can be misleading. It all started when I was playing with my son and twisted my pelvis 4 months ago. It didnt hurt much so I ignored it and continued with regular activities like football, running etc. Then during an exercise routine I suddenly went into a spasm all over my hips and back. Spasms have gone away in ~ 1.4 months with massage and chiropractor but I have low back pain when I stand more than 20 minutes. Resting is OK. Low back pain responds very well to NSAIDs.

My biggest concern though is that I have noticed that my upper back hurts a lot in the morning. Pain is much more when I sleep flat on my back, almost feels like someone punched me in the back when I wakeup. Its horrible! If I sleep sideways the upper back pain is much better. I am not sure if the upper back pain is because of sleep posture or because of possible AS. Has anyone experienced this? Are there any tips to reduce this? Any suggestions or advice? I have no one in my friends circle or family who has arthritis or AS so I cant get any useful tips/advice

Thanks a lot!
Posted by: Dotyisle

Re: New to the group, have a few questions - 06/19/19 05:51 PM

Hello P-guru,

When I started with AS, sleeping posture seemed to make some difference.... but was even more impactful for me with the SI joints.

Some of your symptoms sound familiar.. I am also HLA-B27 positive and have family history in addition to x-ray evidence in SI joints and low back that eventually led to my diagnosis. I also had the early morning stiffness as well..

What are you presently doing to for treatment... any stretching, hot packs, icing... what helps, anything make it worse?

Posted by: pseudoguru

Re: New to the group, have a few questions - 06/19/19 09:41 PM

Thanks for the quick response Tim!

Currently, I am doing physical therapy for past 5 weeks. This has helped me gain some strength in my pelvis and has stabilized the pelvis a little bit. I have found that stretching increased my pain. Rather training with a resistance band has helped me more.

I take NSAIDs when needed but I have tried to keep this to a minimum, maybe once or twice in a week. I have not been prescribed any NSAID so currently just take Ibuprofen which is over the counter.

However, NSAIDs are not helping me with the upper back/chest pain. Only thing that helps a little with the upper back/chest pain is either a massage or changing my sleeping position.

Any help or advice regarding upper back pain/chest pain from the community would be very helpful!

Posted by: DragonSlayer

Re: New to the group, have a few questions - 06/21/19 02:29 PM

WELCOME, Gurpreet!

The HLA B27 testing is flawed, producing many false-negatives. Your symptoms are very common in AS; women present differently than men and usually have more upper body activity early.

I had terrible costochondritis lasting many years and the only thing that eliminated it was the NSD: "The IBS Low-Starch Diet," by Carol Sinclair. Also, please check out the NSD and Diet Forum here.

Posted by: pseudoguru

Re: New to the group, have a few questions - 06/24/19 02:35 PM

Thanks John, that is a very helpful suggestion! I will try the NSD diet and see if that makes a difference. How long did it take you on NSD diet to get rid of the costochondritis?
Posted by: Dotyisle

Re: New to the group, have a few questions - 06/30/19 09:07 AM

Hello Psuedo,

When I started on NSD diet, I noticed improvements very quickly. However, this is not the case with all individuals at the site. We are all very different.

My AS I believe is very much tied to my intestinal health... with NSD I emphasize vegetables (lots of salads with olive oil/vinegar) and walnuts with raisins as snacks. I start morning with all natural yogurt with probiotics and eat other foods with probiotics.

I also stretch 2x per day... but it does not aggravate my AS...if I go a couple days without stretching I can start to feel a little stiffness in back.

Best to you on finding answers... keep the questions coming if needed.

Posted by: DragonSlayer

Re: New to the group, have a few questions - 07/02/19 02:06 PM

Hey, pseudoguru:

I CHEATED by combining very strict NSD with antibiotics, but the severe costochondritis I had for the majority of 20 years totally vanished in 6 months. Diet alone helped reduce the pain to the extent I was able to sleep Okay, but it was the cycles of antibiotics that totally nailed AS coffin shut.

Posted by: pseudoguru

Re: New to the group, have a few questions - 07/05/19 07:08 PM

Thank you very much John and Tim!

My diagnosis is currently in a state of flux. I still have not met the rheumatologist (got an early appointment next week as someone cancelled their appointment) and at the same time my GP referred me for MRI of lumbar and pelvis. MRI does not show any abnormalities in the pelvis and SI joints, but Lumbar MRI shows bulge with 2 discs. So I am also referred to meet a Physiatrist in case this is not AS but some form of herniation/stenosis.

So I guess I will have to wait to know what exactly is going on - this is the frustrating part
Posted by: Dotyisle

Re: New to the group, have a few questions - 07/06/19 10:56 AM

Hello P-Guru,

Understand the frustration... anyone in pain without a proper diagnosis can relate. Despite having classic symptoms (x-rays, early morning stiffness, back/SI pain, family history and HLA B27 positive), still took me over a year to get diagnosis.

Best to you finding answers and finding relief.

Posted by: pseudoguru

Re: New to the group, have a few questions - 07/11/19 11:20 PM

Hi Tim,

Just a quick update; the rheumatologist thinks at this stage its difficult to conclusively diagnose AS as MRI was OK. Wants me to come back in a few months if symptoms worsen or new symptoms arise.

Also the disc bulges are complicating things a bit as some of the symptoms could be due to the disc bulge.

So I guess I will just have to wait a while and take precautionary measures.

Posted by: Bry4

Re: New to the group, have a few questions - 07/12/19 06:45 PM

I've only been at this 9 years (X-Ray,MRI Positive AS in SI,Low Back,and Neck) and in those years i have confined myself to sleeping in a Lazy Boy. I am also HLA B27 Positive, but that's just another BS test that can say yes or no depending on those wonderful false positive.

As of 148 days ago I went complete narcotic free (hurts like hell) but I couldn't live like a zombie. As far as the NSD diet I keep convincing myself that I cant afford to eat that way.