Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New member story: Feedback on your thoughts please

Hi everyone,
This is my first posting and I would love some feedback from you all. I am a 24 y/o male. 6’2 Caucasian.

I have recently been getting a lot of tests done after 3 years of separate flare ups…each lasting 4-9 months of brutal pain. Each time, I have not done any specific injury or action to cause the pain – it has been simple tasks such as bending over, or cleaning, or stretching. I really don’t know whether or not I have AS, however, I have been tested positive for HLA-B27, which has me worried. I am an overall very healthy person who has a clean diet and over the years have exercised daily. I have no family history of arthritis or any auto-immune diseases.

My most recent incident was 4 months ago – over 5 days I went from walking to stuck on the floor. I had severe buttock pain for 2 months which has now calmed down – but still comes and goes, and sometimes switches from right to left. I thought I had a disk injury but the MRI’s proved otherwise. I have had bone scans, blood tests, MRI’s, X-rays and the only thing that has shown up is “minor sclerosis” in my lumbar region. Originally, my C-reactive protein was high (16) but now it has gone down over the 4 months. Dr’s have told me that this sclerosis may not be the cause of my pain and that it could be soft tissue pain or possibly AS …but they are not 100% sure I have AS which is frustrating as He*L. MRI doesn’t show anything and my bone scan came out perfect. I feel like this pain is in my bone/spine and not muscles but I don’t know.
My pain has me unable to bend forward or thrust my pelvis in ANY way. I cannot even lay down on my back and pull my knees into my chest without my lower back having a severe pulling pain – particularly in the middle of my spinal area/column above my tail bone to my mid-back . I have healed before, but only temporarily and last time I had issues, this pain felt slightly different.
Treatment: Right now I get a neuro-muscular massage one per week and try to lay on the ground on my back for 20 mins each day. This helps for temporary relief, however, it doesn’t improve my range of motion. I have plateaued and feel like my pain and range of motion is STUCK. I am currently experimenting with several different muscle relaxants after trying all of the “effective” NSAIDS available such as naproxyn, advil, ETC. I take Tylenol arthritis and muscle relaxants every day without much difference. I also take Tramadol at night as a pain killer. I cannot bend forward to tie my shoe or put my socks on without severe pain. Getting in and out of cars is torture.
*I have been on the NSD diet and have been strict for 2 months and have not had any improvement at all. Although I have tested positive for HLA-B27, my rheumi is not sure if I have AS or not. After 4 visits and no answers, he said the only step forward is to try anti-TNF meds, but I do not feel that I am in as much constant pain during the days. He actually never heard of the NSD diet… I also do not feel stiff in the mornings, I actually feel better when I first wake up after a good night sleep. I feel like I have a lot of AS symptoms but also don’t feel fully convinced sometimes. I would love to hear what you guys think since I have no idea who to talk to now or what to do. Working and sitting is horrible and I am unable to do any activities except float in a pool or hot tub. I used to be in the gym lifting weights and running 5-6 times per week before these 3 years. I feel depressed and discouraged since I cannot do anything with my girlfriend and friends or family.
Thanks for your time, it is much appreciated.

Hello there,
first of all I would gently suggest you to try to relax, stress and panic will just make your situation worse no matter what it is. Does your pain becomes stronger after exercise? How strict are you about your diet? What do you eat and drink? What have you used from meds?
Don't be depressive there is always solution, just sometimes you have to make greater effort to reach it.

Thanks for the response. I am working hard to get lots of sleep every night and focus on breathing exercises to de-stress - especially at work. I usually eat tons of fish, chicken, meats, and loads of veggies. I have followed the NSD book on here quite strictly. I drink 1 coffee per day without dairy added and the only alcohol I drink is gin since others contain starch (once per week). Overall very strict with diet!

For medications I have taken cyclobenzaprine, tramadol, baclofen, and all of the nsaids available - but nsaids brought on stomach issues and possible small bleeding. I do not feel any worse after stopping nsaids though. The muscle relaxants make me feel slightly dopey, but I am ok during work.

I typically only do walking, which feels fine when I do it, as long as I dont bend over/forward. Usually after work from sitting I am quite sore though. It's my range of motion which is most troublesome for me. I also find I am getting neck stiffness out of nowhere. I am not doing any rigorious exercise. Only walking for now and sometimes floating in the pool. Hot showers are best for temporary relief (1 hour). Does anyone have any suggestions on other tests I could do to determine AS...or help for pain relief for AS-like symtoms?
THX

Hi, psr; WELCOME:

You are B27 positive with sciatica and characteristic bending issues--for me these are a cinch-diagnosis. NSD has perhaps not been enforced properly enough for long enough to work, but it will; please visit diet forum to address issues there! Will provide supplement plan for You then.

If You keep taking gut-destroying NSAIDs, the diet will not help as much and You will accelerate this disease even more.

FAST and You will get out of inflammation and back into the gym, which is the best thing in the world--and You can stay there with proper diet!

HEALTH,
John

Hi John, and thank you for replying. Do you believe that a fast could really help the pain like this? It feels like it is boned related and judging by the x-ray of sclerosis in the spine..although I know this may not be the cause of pain. I stopped the nsaids 2 months ago thankfully. Only tylenol+muscle relaxants and pain killers now.

What kind of fast are you suggesting and for how long?

Thanks John. Appreciate your reply and i'll soon enter the diet forum.

We are all here to help each other! Your symptoms are very much AS-like and althoght your reumy is still not sure about it,I suggest you to continue your NSD(its a some sort of healthy diet and you may chek your blood test time to time to be sure that everything is ok) with some "small" changes-try not to drink coffee or reduce it and no alchol at all because it can damage yor natural intestine barier and 'open a free path' to bed bacterias,which are the triggers for disease. Alcohol increase intestine permeability so Klebbsiella may leave your gut and cause bad autoimmune response.
Include some safe fruit in your diet.For me,now,those are figs,grapes,pineapple and blueberries...all raw.
Also try some streching exercises,there are many links on Youtube how to do it,especially for persons with AS.
To reduce your pain level try physio,helps me a lot.
No matter what it is,you are on the right place and ,maybe,just at the right time!
Wish you luck!

Thanks for your opinion! I will reduce my coffee for sure and remove alcohol from my diet. Will definitely get blood tests soon again. I have gone through the physio over the years, howevever, my pain feels quite acute during this time around and as I have mentioned, my range of motion feels stuck. Massage therapy does help, but I haven't found that exercises have improved my pain or mobility (yet).

Hi, sorry to hear about your situation....

I would like to add that you should ask your doctor to do an ESR test on you. But it should be done during a flare up so he can clearly compare to normal values. I see you have done a CRP test....hopefully more evidence will point you in the right direction.

Good luck

Hello there,

Glad you found us and hope you are feeling better. Many of your symptoms sound as if they could be AS. If have questions with NSD head on over to the diet forum.

Hope you can find some solutions to the pain.

Best to you,
Tim

Thanks to both of your last responses. I will continue with my strict NSD for now and hope to find some relief. I will also ask my dr about the ESR test as well. As I have mentioned above, the pain I always have is the kink or pull in my lower spine that disables me to bend forward even 15 degrees (and back). I can, however, stretch from side - to - side no problem..

Enjoying the feedback