spondylitis-Pain is worse with movement, better laying down?

This is the opposite of what is typical with PA, and even with my past PA flare ups, but this time my pain is worse when I start moving. I sleep just fine because laying down (on my side) is more comfortable for me than movement. I found that when it comes to my other joints in the past(shoulders, hips, kness) I have more pain at night, but with this spine pain I need to lay down. My rheumatlogist was thrown off by this fact and draws the conclusion that my spine pain is unrelated to my PA beased on that, but I just know this is my PA because it feels the same ect. ect.

Anyone with spondylitis who feels better laying down than they do moving around?

when my back is flaring ie: I have overdone it, nothing but laying down helps. I will go use an infra red sauna at the RMT's and that helps. That's about all I can add. By night I want to be laying down almost every night by 8 or 9 on a good night.

Its a day by day thing.

On "normal" days, I need to balance movement and rest for my back to do ok. On flare / totally overdid it days, I find I need to lay down more, but also need to change position fairly frequently as my si joints are involved.

I am much better when lying down especially if im having a bad flare-up

My back hurts badly if I overdo it, and I use heat and have to lay down, but now when I am sleeping my knees and legs hurt so bad all night. This is a new thing for me. One night I woke up with my foot in so much pain it was unbearable. I even had it x rayed and they said 'normal'.

I am interested how you put heat on it. Maybe mine is different. I can't even stand the thought of heat, it makes it hurt so much more. I want to lay bare skin on ice. I even take cold showers. How were you diagnosed? The doctor says we should do an MRI, but I have a $6000 deductible, so I'd have to pay for that. I wonder if there is an easier way. A blood test or something?

Shawn said:

My back hurts badly if I overdo it, and I use heat and have to lay down, but now when I am sleeping my knees and legs hurt so bad all night. This is a new thing for me. One night I woke up with my foot in so much pain it was unbearable. I even had it x rayed and they said 'normal'.

Dear LC,

Mine is also Spondyloarthritis, and I can tell you that I cannot tolerate cold on it at all, but that said, my DC has told me that if nothing else works, 10 minutes of heat followed by 10 minutes of ice will. Well, I thought this such an inadequate an answer, but it really did help me! I cannot take the ice alone though, no way!

The arthritis exercises at the Y helped me for awhile, I even started taking swimming lessons, and I loved it, felt pretty well, finally the coldness of the water crashed me beyond belief. I picked myself up after a while, went back to just the classes, those are in warmer water, but the temp was not consistently warm enough, and I was having those severe muscle attacks, the Rheumy said no more pool for now, that was quite a while ago. Plus I have Raynaud's so cold is my enemy.

Now to X-rays. Funny how you always have to keep going back for more, and different ones. I understand that they are looking for disease progression, but I started with complete back and neck MRI, thought I would die from laying flat on the table all that time. It showed very little, bulging disc, facet problems. X-rayed by surgeons was by 3 top notch Docs told that surgery would only ever make me worse. My GP and DC go over MRI and see the curvature of the tail bone, that was never mentioned, that I can find, nor was the SI joint damage until the Rheumy does X-ray. Myleogram which was like getting rear-ended all over again readings were basically no help, and I could not stand up straight for months after that. Myleogram came before second Rheumy who diagnosed me, though my GP was well on the way by then.

I have learned to take the films to the GP, DC, and whoever else will look at them because there are things that are not found or not mentioned, ESPECIALLY if they are not asked to be looked for, so I would start by looking at the tests that have already been done, because your answer could have very well been there all along!

I have learned that it does not take severe damage to cause severe pain, and it can be a lot of mild or moderate problems that can add up to one large pain in the back!

Sorry if this seems tangled up, I have been through this for 7 years, just to get a diagnosis, because I should have gotten over the car accident, been to several University hospitals for many of these tests and exams.

My back was always so bad, no one ever noticed how bad my knee, ankle and foot are on my left side, assumed it to be sciatica causing the pronounced limp, and drop foot, until my current Rheumatologist saw me and he caught it right away, but did X-ray those along with the SI joint, and there it was, plain even to me! I yelled about the worst pain, which was/is my back.

I am getting to the point where I can barely stand to lay on my back or my sides, may have to eventually rig up something like a chiropractic table to sleep, but strangely enough it is easier to lie on my back, as bad as it hurts, because too much side laying will tilt my pelvis, oh, you talk about pain!!!!!!!!!!! Only a DC can straighten that.

Not everyone reacts the same, you could be in the minuscule minority as to needing ice opposed to heat, or there may be something that is more prominent than the SI joint, and it could already be on an x-ray from your past. $6,000.00, that is a whole lot of money!

My Rheumy looked at all the x-ray reports, but he knew what was wrong with me before he even looked at me, I was required to fill out an in-depth questionnaire along with records from my GP and DC. By the way, I do not have psoriasis, did not know my Grandmother did until after I saw him, so he had no family history of RA to go on.

Chiropractor, he was the very first one I screamed for at the car accident, had to go to hospital for x-rays before he could touch me, NOTHING FOUND, was released, next day to the DC, we have decided that much of my pain is from the tailbone, and his adjustments are the only thing that will help that, I simply tell him to "put his foot into me" and he knows what to do. When that finally moves it has the kick of a firing a cheap shotgun!!! The release of pressure is astounding, the relief immediate! This curvature showed up on a regular x-ray, this curvature will continue to progress and could be a big factor.

LC, I am not a Doctor, Nurse or any type of medical professional, so I can only share what I have learned about myself and the process, so by all means listen to your Dr, if you trust him, just ask if a less expensive test can give you the answers to this, and have him or someone take a look at any done in the past.

Most of us also have Fibromyalgia, and I know a few women with this who can only tolerate cold baths, showers and ice packs. Just as the Rheumy told me "FM is a condition, not a disease, it is caused by chronic pain, it changes the brain, you have to get to the cause of the pain".

I can only wish you well.

SK

PS I feel as though I have a good start to my memoirs in just a few short days of finding your site!

I think your Rheumy has been into his samples of pain meds...... Of course back pain can go away when laying down. Inflammation will cause it. Think back to when you had zits.... They didn't hurt until you tried to pop 'em..... Standing etc puts weight on the inflammation (or spine zits) same as trying to pop a zit.

I am not yet diagnosed but have many, many symptoms and family history of P. I suffer from very bad SI pain and I HAVE to lie down to relieve the pain. Although it's not really gone, as I'm sure you know. I can walk ok but sitting or standing still are killers for it.

Hope it helps you a bit to know it's not just you.

PS: My suggestion is to print off this page to show to your rheumy so he/she can see that others get relief from back pain in the same manner as you.

Hey Petunia,

There are very few chairs that I can tolerate, that goes for car seats too, and I am limited as to how long I can tolerate them. It is usually easier to lay flat on my back than any other body position, though I love the Chiropractor table, that is the best of all, as I can sleep there lying face down.

I have the pitted fingernails, no rash, not yet, read recently it can show up even 20 years later! I am very surprised that the blood tests and regular x-rays have not been taken of the SI joints. Sounds as though you need to start making some demands of your Physician, or move on to another one.

Like I told Elizabeth, you have to sometimes get these Doctors by the necktie and hold them accountable!

Stay strong,

SK

Back to the zits,

"should I or shouldn't I pop them? That is the questions!"

Hahahaha

How are you LC? How is the back pain? Rich and lamb have been talking to me about proceedures for Spinal Stenosis, have you been paying attention?

SK

I haven't. I went on vacation, but I'm back now. The pain is still there all the time. The pain killers make life functional though, so thank god. My Rheumy dropped the discussion of this being anything else. The pain went to my hips for a while really bad. I couldn't even walk. Every time I rolled over I felt several pops in my hips. Now most of my joints are stiff and painful. My hands have this hollow pain feeling that the doctor didn't understand. Maybe hollow isn't the right word. It makes total sense to me. I can't do anything with them. I'm kinda depressed the pain is lasting this long. I think usually my flare ups only lasts for 2-3 months so I was hoping to feel a little by now. This is just a bad one. I went on the anti-inflammatory diet. No wheat, corn, dairy, eggs, sugar, processed foods. So, I'm basically just eating veggies, fruit, fish, nuts, seeds, and beans. I'm going on 3 weeks with the new diet. Hopefully I will notice a difference soon. I do feel healthier and have no desire to cheat on the diet, so I feel like I am doing the right thing. I also lost 10 pounds.

Hi LC,

That sounds very promising with the 'weeds and seeds' diet as I call it! Good for you, it takes great will power to get and stay on that!!

A Chiropractor may do you a world of good, your pelvis could be tilted, I have gone through that and it is excruciating! Sometimes he can even get the SI, pelvis, and the tail bone in a good place.

I know your pain, it is beyond description really, and I hope that you can find some real relief!

SK

PS, If you read over my discussion and my blog asking if anyone has ever had Spinal Stenosis surgery, lamb and Rich gave me some very good info!