Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Weird feeling

Hi Lori,

Well, I must say that I don't feel like such an alien anymore! I'm glad you can relate, but sorry that you know what I am talking about! I have never heard of referred pain before.
When I spoke to my Dr. I told her it wasn't what I would describe as pain either. I said I really couldn't describe it; it was just weird. I'm really happy that I found this site!

Thanks again!

Trinka

Hi Korye,

I think you know exactly what I am talking about. I'm really glad I posted about it. I thought about it for a couple if days. I didn't see anything posted about it at all, and I'm with you, when it is really bothering me I just go to bed knowing that tomorrow will be different!

Thanks again!

Trink

Hi Erie,

Thanks for your suggestion (and the humor!!). I agree with you that it isn't quite pain. It's just a weird feeling. I wouldn't even say that it is a weak feeling. I know that I will be able to move my muscles and such, but it is kinda tingly. I do get the pain in that area after a day or so though.

Before I was dx I thought it was either Fibromyalgia or Lupus. I was totally taken off guard by the AS. I have three relatives with Lupus. I'll take your advise and mention it, again to my rheumy!

Thanks!

Trinka

Hi Trinka!
That is exactly what I am experiencing also. I often feel sort of weak and sore in some muscles, and then hours or top a day or two later I have a lot of pain there.
I can really relate with your 'face feeling' too...
Sometimes I get all achy and weird in the muscles in my arm or my leg, a bit like if I was moving that part under water - I feel weak but I am really not...it's difficult to explain! But this feeling is always the start of a flare in my shoulder or my SI joint or the knee or whatever.

Now. The problem here is that I am not officially diagnosed with AS! So maybe I'm just crazy too...

good luck,
Jade

Hola Erie, long time no see, how're you doing?

I believe you have AS and Fibro (amongst other snacks..)
Could you please, if you have the time, explain shortly to me the difference in symptoms you are experiencing between those two?

I am still here without any diagnose at all....no fusion - no AS, no trigger points - no FMS. But I am hurting and this is for real!
I am currently looking again at the FMS possiblility, so any imput from you would be much appreciated

Thanx,
Jade

Referred pain is like when you have a disc impinging on a nerve root in your spine but you don't feel it in your spine, you feel it wherever that nerve travels to. In the lumbar spine it usually affects your legs/feet, etc., and if it's in your neck you could have problems in your arms and fingers. My leg felt like boiling water was being poured down the front of it but it was otherwise quite useless, like it wasn't there, just the pain. I spent 3 weeks having to sit up in a chair because when I tried to lie down or if I was on my feet (with crutches) the pain was a whole lot worse

Cheryl

Dogs never talk about you behind your back

Yes, I know what you mean alright!
I get it in my forearms and shins alot -also over the ribs before they become really sore...

Hi Jade!

Thanks for the post. You're right it is such a weird feeling! I feel exactly the same as you do. It is kind of a weak feeling but then you know you can still move your muscles!

I find it odd that so many people here don't officially have the dx yet. I can't imagine that the medical profession would think that anyone would want this thing, and yet if you come back B27 negative it seems like they won't dx you. I know when my B27 came back positive, it basically was a given yet, they say it's not the "cause". If they don't know the exact cause then it could be so many things coming into play. Oh well, just the rantings of another "crazy" person I guess!

Thanks again! Best wishes!

Trinka

Hi Amber,

I get it in my shins & ribs also. It really bothers me when it is in my face! I'm glad that others know what I am talking about.

Thanks,

Trinka

Hi Jade.

No tender points really does suggest no fibro, although tender points can come and go. Usually I have them all, but sometimes some of them disappear for awhile. (By the way, a tender point is a painful area for FMS, a trigger point is a physiologically recognizable point found in myofascial pain syndrome).

This is a quote I dug up from a post I made some time ago (yes, I'm cheating!):

FMS pain and arthritis-type pain are totally different. I can easily differentiate between the two. And if I can't then I know it's [the mysterious] fibro. FMS pain is more diffuse, and it hurts "deeper." It can be in the joints, but I find it affects muscle areas [,tendons, and ligaments] more often. It can feel like a sore muscle, but more often like a deep, extremely intense, gnawing, throbbing, ill-defined pain emanating from the deepest region of the deepest bone. Sometimes it is so "deep" you can't really tell where it is -- is your lower leg hurting or your elbow... who knows???

And to add some, I find FMS pain moves around more. Not that arthritis pain doesn't, but fibro pain moves faster. Also, arthritis pain is associated with stiffness in the joints and sometimes red, swollen joints. Fibro itself doesn't affect range of motion -- well, except for the fact that it makes you want to avoid any motion at all.

I hope this helps a little, there's not really such a clear definition between the two in verbal description--it's hard to describe unless you can actually feel it.

'Erie (-: