Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group please help? question about arthritis AS pain!

Hi its Mellie.
Its been a while since i was on line, I had an aweful experience at the Jewish hospital, basically the rheumatologist was treating me as a man with AS.
We all know that men and women with AS experience this disease differently and that AS is really unique to each individual because of where the spinal changes are.

My question , request is i would like to hear from you all is how you would describe your pain, rather than say dull pain could you be descriptive in your answers. i have such a hard time with the docs i guess is because i have such weird symptoms maybe because of nerve damge.
i think hearing your answers will help me to understand the arthritis involved with being a women with AS. i would like to hear from you blokes too though because i trying to understand whether this is AS or not, the docs maybe doing a muscle biopsy in the future to determine whether i have a muscular disease too.

Please describe the location of the pain and any weird sensations. I know this is a funny request but i think it would help me to understand this disease and just how bad it can be in some individuals.

thank you so much
and please i don't care if you waffle on it sometimes helps the soul to do so. its not exactly something that i am not famous for ha ha.

cheers

mellie

i believe in creative thinking.

if you're asking about the prototypical " PAIN IN THE BUTT " i've always described it as a 5,000-10,000 watt blowtorch
that fires up one side for a while moves on the to other side at will and often flames both sides at once- It goes
where it wants to...everyso often it becomes a billion watt flamethrower (those are really bad days) and once in
a while it iddles down to being about a 200watt lightbulb...but it never goes away.

for many years i was content to say "horrible", "torture", "terribly uncomfortable" or such when asked 'so, how
did the past year go?' i was never a screamer and still retain my sense of humor.

the more significant your complaints and distress, male or female, you get more attention and concern.
i venture to say, male or female, you walk into the doctor and say 'dull pain' well the doctors gonna yawn
and say take two asprins and call me next year, why did you come in today?

everybody has 'dull pain'... however, pervasive dull pain tweny-four hours, incessant, non-stop, screaming dull pain
is something more than just a dull pain...but look ya gotta SELL it...
and i've learned it helps to DEMO...touch the area and say it's one inch deep inside here...trace with your finger
the 'where does the pain move part'...geting better doctoring is in part being a better patient.

if this DULL PAIN was so bad you went to the doctor, did you cry when he ignored your complaint? TEARS and a
" aren't you going to do anything ? " is a very powerful response...that ball's on your side of the net.

also, note---you say he treated you like a man with AS, but you didn't say what he did or how he responded...
so my assumption is he didn't treat you at all, he just listened and did nothing...the time to express frustration
is to his face in the exam room...most of my doctors end the conversation with a , 'that sound ok?' don't
say yes if you mean no. when you went in what were your expectations ?

the reality is that the DULL pain is the action of the spondy monster eating your bones up from the inside
out; it's insatiable and unstoppable. if you complain about DULL PAIN and sound as if it's something minor...
why did you go?

best
aB

Hi Mellie,
I have always had this problem talking about pain with my doctors... never having the right words or sometimes not even describing the pain. Sometimes I am under so much pain that I can't even describe what it feels like. I have even had pain that caused other places to hurt. Pain is also variable for me. Just last week, my doctor came in the room all cheerful and spirited and happy to see me. He asked "how am I doing" with a great big smile, and I said "GREAT!" only because he cheered me up. Then I was beating myself up mentally the entire visit because I know I went there to talk to him about serious issues, all of them that regarded severe pain. I was waiting for him to respond with, I thought your said you were doing great, but thankfully he didn't. But just because he didn't, does not mean he could not have used that against me. It's important for me to say "Horrible, I am in agony!" right away from the start, so then we can get right into the questions about how bad my pain is.

Then there are the times, where I get so used to saying things like "I'm doing ok I guess", "I'll live through it", "I could be better", "I've had better days", "it won't kill me" and so on, and slip and tell the doctor this on accident, even though I would actually be in horrible pain. These terms we used on a daily basis at home, to our friends and family or even coworkers, could get us nowhere with our doctors, because each one of those phrases sounds like the pain in under control to him....when actually it's not. When we do thins we're just covering up our true feelings, and hiding the pain from the people around us. I'm just so used to having to 'tough it out', I think. We can't hide the pain from our docs.

As for my pain....Well... I have to say that not all of my pain is from AS. Some of it is mechanical damage, or brought on from complications from AS, or even from completely different problems. But as for my overall joint pains (all combined), it is usually stabbing, aching, burning, throbbing, severe, intense, poking, jerking, unbendable (either fused or swollen), hurts to move them, cracking, painful to touch, over sensitive to moisture/weather, unable to put weight on them, grinding, popping, clicking, binding, pinching nerves, swollen, etc. Notice I said that my pains are variable though and these are all of my joints combined. Not each joint feels the same to me either. Some bother me more than others and sometimes my pain is even tolerable throughout my body at times. But I do and will feel these pains over a wide variety of joints, over any given length of time, and of course there are some days where everything hurts too.

Voice out your pains too. if you feel it hurt to walk into the room... say it to the doc. If it hurt to sit so long in the waiting room...If you feel his chair is uncomfortable on your spine...If he had you bending in all directions and the pain is killing you... If the trip over there was unpleasant... if the weather outside is getting to your joints... if the xray table you layed on caused you pain... we must say it. This is something I need to do too, because the doctors visits I have are painful in itself.

I hope this can give you some ideas,
I am looking forward to seeing more replies to this too.
Take care,
James.

I recall questions like this in the past, and I recall a very good reply on one occasion when someone stated you should explain to the doctor what you can and can not do due to the pain.

Other than that, I always prepared a list beforehand when I saw rheumies when in the worst pain. Sometimes I would have an appointment and by the time appointment came felt better and not the easiest to pinpoint and explain.

To your question...
- SI pain - Felt like someone had pulled my right leg out of the socket and jammed it back in place and did not fit correctly. I would describe it to doctors that felt like a cloud of inflamation deep at ball and socket. Would also explain to them did not allow me to sleep on right side, back or front (had to sleep on left side for entire year until diagnosed properly). I could not climb stairs due to the right SI pain and in morning if I slept on any side other than left took 15 minutes to get out of bed and could not walk on right leg... had to crawl to bathroom and take hot shower. Slowly and surely I could start to walk a bit again. Also sitting in chairs if not ergonomic for my hips resulted in the same pain as sleeping on wrong side. I would say that it was an intense pain and nothing helped it until I went on azulfadine (and now diet). I bought a small luggage carrier you see older people use for groceries for work to carry around audit bags to clients... took a small chair from home to clients to sit it because of issues with chairs at client.

- Back pain - generally stiffness in low and mid back. Again, did not allow me to sleep on front of back... if I did, back was extremely tight and painful after 3-4 hours of sleep. If overdid it then back became more stiff... had to quit all sports. Generally stretching helped the back. Back would improve throughout day after waking up. Sometimes felt as radiating pain from spine in addition to the stiffness.

Those were my early symptoms... developed IBS, neuropathy at times and minor pains when full flare in neck, chest, knees, ankles. But wanted to provide small example of back and neck pain for you.

When you feel bad, sit down and back a map of your body and label and describe the pain at each location. More you prepare before you see the doctor, better off you will be when describing the pain to him at appointment.

Again, I liked the suggestion of what you can and can not do from other poster here in the past... wish I could give the credit but can not recall who.

Tim

it took me 20yrs of suffering from pain in my sacroiliac and lumbar before i was dx'd and by that time i was falling down for no apparent reason someone would touch my low back and my legs would buckle and it felt like someone was stabing me in the back with a bayonet or poinard(long knife) i could only sleep on my left side only my knees and hips felt like hot coals were shoved inbetweeen the joints..when they ask on a scale 1-10 10 beeing the worst id laugh at them and told them there scale didnt go high enough to describe the pain im in.....i finally got a dx but by then i was fuses in the si and almost my whole lumbar was almost fused and my spine went from being round like normal to become a square and spurs in the corners where pointing at each other......i got so used to the pain by then that it didnt bother me as much so according to theyre pain scale it was hardly worth going in...even when i told the docs about my falling down the buckling of my legs how difficult it was getting out of bed every morning and how many hours of torture i endured til i was partialy funtional it still took 20 yrs to get dx'd my GP was the one who figured it out and dx'd me then sent me to a spine surgeon and was verified by him so now 5 yrs later im finally being treated for my pain but the damage has already been done and is still getting worse they cant stop the fusing but they can slow it down..now that i vented about how i was mistreated and why i dont like doctors very much id follow the others advice and write everything down no matter how trivial you think it is write it down in the KA FAQ is some printable pics of the body so you can map where your pain is and when writing a description make so a 3 yr old would understand how you are feeling thats about the only way i can tell ya......oak either that or look at the post about mean people and you can get some tips that might help ya out........

Schnutz - I like it - how about an animated PowerPoint!

Da Brian

Hi its Mellie again,
I love the idea about the colouring the body chart, awesome idea. i am going to use that defientely. And use a code for the different types of pain.

ladies please answer this post, i am interested in hearing about your pain, i never imagined that AS would be like this. I think that this post coud be very helpful to the newly diagnosed ASer's.
So please i beg you to reply to this post.
Do you have pins and needles?
How greatly does the cold affect you?
Do you experience extreme fatigue, especially fatigue that you can't explain?
Numbness?
Cramping in arms and legs?
pop and crack?

These are all symptoms that i have, the pain in my arms is excruiating, it is so hot here but just having the air conditioning or fan on me will cause me to have tremendous pain, shooting and cramping pain. The pain i have in my neck is like my head is on wrong, just like someone posted about their hip not being in the socket right, most of the time it feels like a knife has been inserted downwards into my joint. i get numb tongue and face, not pain but really annoying sensations, like someone is prodding the side of my nose. a pressure point i suppose.
the area under my sternum has the numbness too, i could stick it with a needle and would feel the sharp prick but it don't feel it like it should i could literally stick the whole needle in.
directly to the otherside in my back i have a lot of pain. stabbing sharp pain.
My hands up to my elbows feels like i have tight gloves on that is 24/7 and pins and needles.
The worse pain i have is my neck the joint just feels like a knife is sticking in it. in the front of my neck it really is the worse because it feels like someone is putiing their hand in there and pushing upwards. it aches in side my throat on the right side most of the time.

I cannot lift my legs without pain, i have to be careful the way i sit and sleep. if i make the mistake of putting my arms above my head when sleeping i can't move them down.
Nighttime is horrible because laying down will cause all of the upper back neck and sternum pain to come on full blast. the numbness and pressure is intolerable.
Nightmare for me is when i have woken to excruiating pain in my chest, rib cage, literally felt like someone sat on me. usually when i have these episodes i am at my worst for the neck and chest pain. my hip pain is bad but ican tell that the pain is different. my S1 joints have eroded on the right side but i have the worst hip socket pain on the left.

Does this sound like AS to you. my muscles literally are throbbing, cramping screaming in my arms and legs. i didnot realise that AS would casue this!

thank you for taking the time to read and answer this post, i think that this could help others especially the newly diagnosed.

treatment for AS is different in men and women, women i understand do experience pain more so then men. Men tend to fuse, where as women suffer greatly with the arthritis pain.
The doctor in Denver obvioulsy does not know this disease, looking at my x rays she said i didnot have AS becasue the S1jointswere not the same on each side, the right is more eroded on the right side.
A female can have AS without fusion! That is why it is harder to diagnose AS in a female!

One thing i did discover is that I am totaly deficient in vitamin D and now take it once every week. something which the doc in denver told me to do was stop it becasue my levels were back to normal within a week of stoppong it had dropped back down

that is probably what is causing my pain. to all sufferes it would be beneficial to you all to sunbathe or be outside for 30 minutes, if you can tolerate it. especially women becasue of the cancer risk. but that does depend on what meds you are on. so please ask about you vitamin levels especially if you are in alot of pain. especially in the winter colder months.

In men their vitamin levels take longer to be depleted but in women with arthritic diseases thay are usually low. explained to me by a former doctor of the mayo clinic!

thanks guys i look foward to hearing from you.

Hiya,

Sorry I am a boy, but have had / Do have ongoing issues of a similar kind.


AS in the neck or jaw will cause similar sensations/ symptons to those you describe in your face, including the tongue.

You should find and absorb the charts tables maps on the spinal level and the signs of problems at each level.

A good starter is http://en.wikipedia.org/wiki/Image:Gray778.png

from
http://en.wikipedia.org/wiki/Trigeminal_neuralgia


Also this is a good one as it shows a good map of nerves and the face


http://www.postgradmed.com/issues/2004/09_04/ashkenazi.htm



A Quick Table Neck Levels and what the levels do
http://www.humankinetics.com/examinationOfMusculoskeletalInjuries/StudentResources/117420.pdf


A full spine

http://www.train.tcu.edu/ross/cspine.htm


The funny spot just outside of the nostrils is likely to be a branch of the facial nerve (trigeminal ?).

The trigeminals can be irritated in a number of ways

from the neck, either inflammation near the the facet joints or other soft tissue.

Something can be happening around the jaw, TNJ, which is not fun either.

In me the trig gets irritatted by way of the lessor and greater occipital nerves ( I am sure everyone is bored with me for saying that, but I would not want anyone to go through the last 7 years or so I've had).

The occipitals start in the upper neck, and you get a number of characteristic pains.

One is margin pain, which is where the occipital nerves cross over the neck/skull margin.

The lessor crosses the margin of the neck skull about an inch out from the mid line of the back of the neck. You often get a very pressure senstive area and distinctive pain. The pain can radiate up the side of the head over the ears and into the face just above the jaw.....and it rocks not!

The greater occipitals are not so far out of the midline on the back of the neck but can project pain up close either side of the spine. If they get bad you have pain/sensations shooting up the very back of the skull the very top of the neck over the join with the skull and more over the top of the head. It bends back into the inside corner of the eyes.
===============================================================================

I also have had similar sensations in the throat where it pulls to one side.

The arms and having them above your head they quickly goto sleep, that happens in a minute or so when things are worse.

The good news is that on the correct meds things do get better, methetrexate has helped me alot, but steroids are what are keeping me moving and to an extent the face pain down.

I find that tramadol is the best of the pain killers for the face stuff, but if it really gets going only steroids have any effect (I 've had alot by IV over the past 2 years to calm things down).

If you want a chat over a personal message please do.....

Dave