Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The Worst Flareup Ever...

I just have to rant to people who might understand, because I'm tired of hearing, "Oh, maybe you have the flu." "Oh, you'll get Strep Throat." "Oh, better take Nyquil tonight." Gah!

I'm having the worst flare I've ever had. It started a couple of weeks ago, when I noticed my left shoulder was giving me some problems. Three days ago, the "problems" escalated. I noticed my throat was hurting quite a bit at swallowing, and my left thumb was going into spasms and hurting at the joint. My lower back started acting up, worse than normal, sending shooting pain into my butt and left thigh.

Yesterday it all exploded. I thought I was getting the flu all over again, but I don't have a fever. Actually I'm BELOW temperature, at around 95F. I have tonsilitis (Yes, I still have my tonsils); my left knee, shoulder, thumb and fingers in general are very painful and I won't even talk about my back; on top of all of that, I got the shooting pain in my right eye again, just like 2 years ago, when an eye specialist informed me of what he thought I have....AS.

The thing that bothers me the most, and that I've never really experienced to this degree, is that my SKIN hurts. Every centimeter of it. My husband wanted to rub my shoulders last night, which almost made me cry. It felt like claws scratching me. Since I was cold and couldn't get warm, every time I got goose bumps, it was very painful.

Even my HAIR hurts. Does that make sense?

I've worked so hard to avoid these flareups, but I don't know how to handle them when they pop up. I haven't had one this bad in 1 1/2 years.

What to do to make my life bearable? I thought I was doing a bit better this morning, but oh no, I'm still in the flaming boat...

Sounds like you are having a rough time, sorry to hear about it. I hope you feel btter real soon. Take care.

Prior to prednisone, I just used tons of ice and took lots of hot showers and baths:

the ice for the inflammation, pain, and muscle spasms

the heat for the muscle spasms

and suffered, a lot

now, when in the kind of flare you describe, i take methylprednisone. really the only thing that works (since i haven't tried dmards or biologics yet). i take it about once every three months.

i'm so much better between flares but can't figure out why i still flare; my rheumy and i gave up trying to figure it out, and we really did rack our brains. but still every few months i flare big, but the medrol dose pack for 6 days is a life saver.

and i find i need extra sleep and so i take it to try to sleep it off, just like when i come down with a viral infection / head cold / the flu.

feel better soon

Hello, Ina. My name is Ed, and I am new to the group. I have a question for you about the skin pain you mentioned. Very randomly, throughout my life beginning in high school (I'm 37 now), I have had episodes of where I begin having the sensation of what I can only describe as a sunburn without sun exposure, of course. It starts in my right shoulder, then slowly works its way down my arm and down into my shoulder blade. After a few days, it disappears, but boy does it hurt when it happens! I can barely stand to move my arm and God help me if anyone touches it. Even a shirt causes a lot of discomfort. No doctor has ever been able to figure it out, but now I think it was AS showing its hand early on. Is this similar to what you are experiencing?

Ina,

Sorry that you are in so much pain. To me it sounds like Fibromyalgia pain. I first started getting pain in my shoulders that would radiate down my arms and my whole body would ache and would hurt if anyone even touched me lightly. Then I felt like I was sunburned all over and the pain seemed unbearable. When I went to the doctor and he pressed in the soft tissue areas I would almost scream out in pain. He first gave me lyrica, which helped a little but after a while it quit working. I am now on Cymbalta and oxycodone which has done a great job. I am still sore but not in as much pain as before. You might want to see your doctor or your rhuemy to find out what they can do to make you more comfortable.

I hope you feel better soon.

Hello Ina,

Sorry to hear about the flare, hopefully settles down soon. I had neuropathy for a few months... doubt it is the same. I had tingling and cold sensation in my arms/hands and legs/feet.

Unfortunately I no longer have enough hair to ever feel it is on fire.

Best to you in finding some help, continue to rant if helps.

Tim

The muscle spasms and skin burning pain sounds like Fibro to me as well. It really hurts and exacerbates the already pain of A.S. Whatever it is, I hate to hear that you are in such pain.

Peoples comments are very aggravating. If they don't want to understand, that's on them.

Hi Ina,

I am sorry your hurting so badly. I have neuropathic pain, and my skin burns terribly, but with three medications we have it pretty much under control, My hair never hurt . I think it does sound more like fibro. They might try you on Amitriptline. I also take Effexor some take cymbalta ( both antidepressents with potent pain modiying effects.
These types of drugs also help dull the A/S pain.
Hugs,

Janet

Sorry for your pain Ina. I'm in a bad flare as well. My rheumy just moved me to weekly humira today. If that doesn't work we may add methotrexate (for the peripheral joint pain).

Janet, I am on citalopram (antidepressant) from a different doctorr and just today my rheum said she may switch me to cymbalta. I had no idea it helps with pain, but she said same you just did.

Hope you feel better soon. I am not laughing at you, but loved the comment about your hair hurting. I'm only 36 and my friends so don't understand. I look healthy so of course they just brush me off. It's very frustrating. But the days where everything hurts-even the hair-are the worst. Hang in there.

I so understand your hair hurting. I have said that many times. I have said that I hurt so bad that I couldn't tell whether I hurt from the front or the back.

I hope you feel better soon.

Hugs.
Possi