Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Does anyone have thoracic pain?

Hi All,

I haven't been on to post in a very long while but I do drop in to view regularly. I have developed very severe thoracic pain which is waking me at all hours of the night - usually around 2 - 4 am. The pain radiates out from the spine and sometimes around to the front of my ribcage. Any movement is extremely painful. I just wondered if anyone else has something like this? After my meds kick in I get along okay for the rest of the day but it is getting to the point where I absolutely dread going to bed.
I was first diagnosed with AS in 1987 by a Rheumatologist, I am HLA B27 Positive. Subsequent rheumy's have poohooed the diagnosis. In 1991 I developed a severe reactive arthritis and have hobbled along ever since.One rheumy said I have HLA B27 positive, sero negative, spondyloarthritis, a couple of years ago they told me it is Fibromyalgia - I am past caring, just want relief. No one can agree on a diagnosis and because I now live in the country - there are no Rheumy's around. I can't get into my doctor for another week but dread the one hour drive to the ER in the morning when the pain is severe in case they just pat me on the head and say nothing we can do (it has happened before).I know I sound a bit desperate (only because I am), I am not given to hysterics and I am usually calm and have coped with the pain over the past many years ok but this thing is scary and so severe I need someone who has suffered similar or am I going mad? I have problems the whole length of my spine, bulging discs, facet joint problems etc.
With thanks for any replies
Dianne

Hi Dianne,

I had a very bad thoracic pain for about a year or more that felt like someone was sticking an icepick into my back right along the thoracic spine. this pain was brought on only by one thing, laying on my back. as you described, trying to sleep became a nightmare. i would take a hot bath and a muscle relaxant and be lucky if i got a 4 hours sleep before the pain would wake me and not let me go back to sleep. in the past, my upper back myofacial pain was not affected by laying, and could often be improved by laying on an icepack. but during this period, laying on ice only made the thoracic pain worse....because i was laying. i finally found a way to lay at night that was not flat on my back, somewhat propped up with pillows to put a curve in that part of my back. after another 6-12 months of modifying my sleeping and taking lots of walks and getting some trigger point injections, that pain settled down. thank goodness. i really was at my wits end, so i can relate to what you are saying.

i've been to 3 rheumys in the last 10 years. early on, the rheumy said he didn't know what was wrong with me. in 2006-2007, a different rheumy said fibro but my physiatrists over the years say that's not it (and i tend to agree with them from all i've read), and this year in march, a third rheumy said its definitely not fibro, but its also not any form of arthritis what-so-ever (he even shook my hand to congratulate me, not realizing that in my pain, i found that rather maddening), though several orthos and my physiatrist are convinced its a form of arthritis, but they are not the experts so don't know which kind. i cared for a few months for a diagnosis, and now, i'm back to not caring, so long as doctors can treat my symptoms and keep the pain under control.

in march and april, i was very distraught, as first it was my upper back myofacial pain, then it moved on to my feet and knees (fronts and backs) and thighs and base of thumb and then my SI was so unstable and inflamed for about a month and a half. then i had a few leg cramps (signals hormonal changes for me, i think), and now, i've been really good for a few weeks. just like that. i can sit and i can work and i can write almost as many hours as i want now. my doctors and i sort of kept me going with ultrasound and trigger point injections and ice and heat and muscle relaxants, but it is quite maddening during those times.

i think all we can do, is try to seek out doctors that can help us. they're out there, even if its hard to track them down. i think a good physiatrist or ortho or chiro or PT or pain specialist or some combo to manage the symptoms and teach us to manage the symptoms and then a rheumy to diagnose and prescribe meds. of course, each of us has different needs, but these are the kinds of doctors that have helped me (minus the rheumies). i will most likely have to go to NYC or such to find a rheumy.

don't know if there is anything in there that could help you,
i hope so, but if not, just wanted to say, i think a lot of us understand what you are going through.

sue

Hi
Yes Thoracic pain is a big deal for me too, although all's relatively well at the moment.
I can totally relate to the waking up in agony thing. Things are so bad at times I cannot turn over or get out of bed as everything is locked and stiff.
Your ribs are probably sharing the inflammation right now, and will hurt more anyway since your probably holding yourslef differently, and working other areas.....

I know it hurts, but if you can stretch the area a little... I cross my arms over my chest, with hands on opposite shoulders, and gently tip to one side then the other.

I do hope you can find some good advice, and get some relief soon


x

To Sue and Amber,
Thank you both so much for your support and empathy - it was sorely needed. Somehow it helps to know others are going or have been through the same sort of thing - but then, that is what support groups are all about.
Tonight everything seems to be flaring from the neck down so I am just taking it easy. It is good to know that this will pass and I can get back to feeling reasonable again.
Thank you again, your letters were so very welcome.
I wish you both pain free days.
Dianne x

Hi Dianne, This was a big problem for me. The pain and tightening around the rib cage. I didnt notice at first that this was after my evening meal. The NSD diet came to my rescue. Good luckGeorge

Thanks so much George
Di x

Hello all,

I am new to the forum but thought that I should reply to this post. I was diagnosed two months ago with unspecified spondyloarthropathy and show symptoms that run the range. I too have excruciating thoracic pain running up and down the thoracic spine and around to both sides of my ribcage (sneezing and coughing are very painful), especially when trying to sleep.
I have experienced neck and shoulder pain for six years, visited pain specialists and received numerous types of pain management treatments all to cover the pain without a true diagnosis. Currently, I am experiencing heel, ankle, hip and back stiffness in the morning as well as late at night when trying to sleep. My rheumy has prescribed sulfasalazine, which is causing a whole new set of side effects to deal with, but I need to let it run its course. My goals in being a part of this forum is to have a venue for frustrations, explanation of mystery symptoms and most importantly to make friends who understand and can laugh with me.

Thanks for listening and I hope to be able to help others by being here!

Jennifer

Dianne, you are not alone in this. As bad and draining as the rest of the pain is, thoracic pain is just special. I've had days when I thought I was going to go insane if it didn't let up. And for me, on one of those days, no med touches it. Nothing.

It's better since I started Remicade. It's always such a relief to feel the Remicade start working and be able to take a deep breath without feeling resistance or tightness.

Prior to Remicade, I would try to make myself breathe through it. Very gentle, deep breaths that at first seem to make it feel worse, but as I exhale actually helps it feel better for a bit. I would stretch (gently) to keep the muscles and vertebrae moving and that also helped for a bit. Luckily, these are both things I can do at my desk, as the very worst days were the ones when I was swamped with work and unable to leave my desk for any length of time. I would stand up every 20 minutes/half hour, but if I was in the middle of typing a job I couldn't do that, so I would move my upper back through full range of motion while breathing deeply.

Then I would go home, curl up in a little ball and wait to die. The next day it would all begin again until one day, I would realize that it wasn't so bad and I would start coming out of that particular flare.

You aren't going insane, Dianne. It just feels like it. The one comfort I can offer is that you are not alone.

Many hugs,

Ladies, Very seriously to me these are classic symptoms which i remember only too well. I had these exact symptoms together with a pain in the shins when trying to walk a little quicker or longer. The thought of a cough or a sneeze or stub of a toe was unbearable. Please please try the NSD if only for 3 days with no cheats. I firmly believe you will see a difference. george x

George, I get the shin pain too. Not so bad if I'm wearing birkenstocks, thankfully. It's pretty brutal sometimes.

Thank you for your advice on the NSD. I have eliminated wheat and gluten-bearing grains almost completely, and keep my potato intake to a minimum (for almost 5 years now). Other starches don't bother me.

Hugs,