The pain ... the pain ...

[NikkiNicole]

I am done. I can't take it anymore. The pain is non-stop. Massive, throbbing, pounding, pulsing pain in my sinuses ... Eustachian tubes opening and closing. And ... my joints. Oh how my joints are screaming. I can't even DO anything even remotely considered "working out". I try walking and can't go any distance. The major joints are in agony, and the tiny ones are screaming to be heard just as loudly.

I can't fight the depression anymore. I feel it licking at me like flames starting to spread. Even when I was eating clean, I wasn't feeling good and now I feel absolutely worse. It is HARD to smile every day. It is HARD to keep moving.

I wish I could spend a week in bed. I wish I could be holed up somewhere and get this FIXED!

I want to be able to work out again. I want to be able to walk and I was even thinking of starting running. But, I can't even sit in a chair without being acutely aware of every joint in my body and not in a good way.

I feel like I have a massive case of rhinitis, or am getting a cold? But if I was it would have been here by now. I sneeze, I feel like I am going to be congested any minute ... and the throbbing goes on and on and on across my cheeks, up into my forehead, I am feeling a gnarly throbbing in each and every one of my teeth. I have intermittent sharp stabbing pains in my ears.

Some days, I don't want to wake up.

I go see the doc on Tuesday. I'm getting very distressed about this. In all honesty, that's putting it mildly.

[Jaha]

Nikki,
I am sorry that you are going thru such a rough patch right now. It is good that you have a doctors appt coming up, sounds like you are flaring and need to be evaluated. It's hard to do anything when you are in so much pain, so just try to take it as easy as you can on yourself. Are you still on preds and any immune-suppressant right now? I really hope that things look up for you real soon. Take care and keep us informed on your doctors appt.

[NikkiNicole]

I am on no medications right now. So, I do see them in my future. Probably prednisone again and going back on CellCept. The prednisone is the most depressing. But, it is what it is and I will do whatever it takes to fix whatever is wrong.


I've never felt this bad. Honestly, in all of the things I went through at initial diagnosis my main complaint was a feeling of malaise and fatigue. Now? I am in constant agony all over my body. Some of the smaller joints are more of a roaming pain, a random thumb joint, my toes, my knuckles ... they trade off.

I'm sitting here with bleary, watery, eyes ... and wanting to cry. I can't take much more of this. Why am I in so much pain?!

[Debbie C]

Nikki,I feel bad that you are in so much pain. Did you talk to your Dr. ? Can you maybe get in to see him sooner ? Maybe upping your preds might help. Can't you call off sick like everyone else at your job does. You need a break girl, when it hits you..it always seems to hit your hard. Thinking about you and hope you get some relieve soon :hug2:Keep us posted

[Jaha]

and tell them how you are feeling, they may call your doctor to consult with them. They will give you something for your pain and I would guess that if they do lab work, that your sed rate is really elevated right now. If you go it might break up the cycle of pain for now and then you may be able to see your doctor sooner. Wishing you all the best.

[NikkiNicole]

I want to go to sleep and never wake up.

[Debbie C]

Yes you do...you just want to wake up feeling better. Your post came thru before I was still writing, I didn't know you were not taking anything. I am sure the pred will help with the pain

[Pete]

Illegitimi non carborundum. Don't let the bastard grind you down. Hope tomorrow's a better day for you...

[NikkiNicole]

I refer to my disease as the B word all the time, Pete. It's like you read my mind. Every day is a steady progression in a downhill fashion so I feel like Tuesday is worlds and worlds away. I found someone to drive me there too. My co-worker told me to stay home tomorrow with heavy pain meds but I don't have any and I truly hate asking for them and being treated like I am seeing medications.
I made a list of each and every little horrible thing that keeps happening so that I won't forget anything when I go to the doctor. I emailed her too ... with words of desperation, and I am hoping she sees that tonight or even tomorrow morning and can have some sort of relief in my sights.
I'm getting rather distraught about how I feel and I know I shouldn't because people have been in much much worse condition than me.

[Birdie]

I am done. I can't take it anymore. The pain is non-stop. Massive, throbbing, pounding, pulsing

Wow Nikki, it seems so little to say hang in there.... but there is not much more I can say. I guess we all get it. We've all been there. Look for comfort in the knowledge that it DOES get better. I guess my best advice is to get all the sleep you can, whenever you can, and ignore the mundane tasks. Just take care of you.

Gary

[Jaha]

Nikki,
My last post was cut off. I was suggesting to you to have someone take you into the ER. They will give you something for your pain and maybe you will be able to get some sleep then. I have had to go, when there was nothing else I could do to releave the pain and I could not take anymore of it. Don't be afraid to go and get some help with your pain. There maybe other issues that is causing all the pain. Please call someone to come a help you thru this awful episode. Take care!

[MaxD]

Nikki, As Jana suggests, get yourself driven to the ER. Tell them you are a GPA patient in horrible pain - at the least they will start with necessary bloodwork and call your rheumatologist - appointments be damned. C'mon girl, we're counting on you!

[whatthewhat]

Nikki, MaxD has an excellent point. Getting started on your labs would be very helpful. It will get better sweetie, not having any meds in you to fight off the B? That right there tells me that as soon as those reinforcements arrive in your fight against the B, you will be feeling better. Hold on.

[NikkiNicole]

Today's a little better, as long as I don't exert myself. My legs are already starting to rage . . .

[NikkiNicole]

The steady decline of the night continues. I am in agony again. Knees and Ankles mostly, and my left shoulder. Also the sinus pressure and pain ... and then randomly I had a weird sensation in my nose.
Have you ever jumped into a pool and not held your breath and water shoots up your nose and it hurts? Yea, I felt that. SItting here at my desk ... no where near any water. I'm also coughing again
Why?!?!?

[Pete]

The steady decline of the night continues. I am in agony again. Knees and Ankles mostly, and my left shoulder. Also the sinus pressure and pain ... and then randomly I had a weird sensation in my nose.
Have you ever jumped into a pool and not held your breath and water shoots up your nose and it hurts? Yea, I felt that. SItting here at my desk ... no where near any water. I'm also coughing again
Why?!?!?

Should I place a 911 call to your office to get you to the ER???!! Come on!! Quit stalling. There's no need for you to tough this out!!

[Alysia]

Dear Nikki. I am so sorry for your pains. Seems like a flare. You must get a decent treatment asap. We cant beat the B without real guns. Isnt it time to finally start rtx ? Please take good care of yourself. Dr. Phil would have say now that YOU need to be your best doc. So please do.

[Arleta]

I'm praying for some relief for you! Get help, and don't give up! It WILL get better!

diagnosed 2008

[ColleenS]

Hey Nikki...when I started having issues pain and swelling (mainly in my ankles and legs) were so intense. I couldn't walk more than a couple of steps and even then I felt like my legs were going to snap. They put me on 40mg oh prednisone and I felt so much better by the time I woke up in the morning. I still had pain but it was better. Get yourself to the ER or call your doc and get an RX over the phone for prednisone and pain pills until she can see you Tuesday.

Sent from my LGUS990 using Tapatalk

[annekat]

Well, I'm late chiming in on this.... here it is the 31st and your appointment is tomorrow. I'm wondering how you have been doing through the weekend. I don't think I've had quite this level of pain that you are having. I think it is important, even if you are off meds, to have some on hand in case of this sort of thing. When I had the most joint pain was before dx, and I had to take it upon myself to order some pred from one of those Canadian online outfits. It really helped, and it didn't take much, only about 5mg. did the trick. Every case is different. Anyway, now I'm trying to always have things on hand that I might need, pred, pain killers, antidepressants, whatever I've been prescribed in the past... I go ahead and refill any remaining prescription so that I will have it, even if I don't currently need it. Going to the ER sounded like a good idea, but if you didn't, you'll see the doc tomorrow. Best of luck with getting what you need to calm down what does sound like a flare. (I too, would resist going to the ER, so can relate....)

[MikeG-2012]

I'm late getting into this too because I was unable to get in to the forum for a while.

NIKKI: YOU I STRONGLY BELIEVE THAT YOU HAVE ACTIVE DISEASE, AND NEED HELP NOW!!

When my sinuses were that bad, I had the same symptoms as you--uncontrollable pain that I was taking three different pain pills for different levels of the headaches. My rheumy kept telling me that it couldn't be active disease, until my ENT dragged him into his office and showed him the video of my sinuses. The were "raw and angry" and "Looked like hamburger" according to the ENT.

GET HELP NOW!!! Don't leave until you get massive help, and they take you seriously. If they don't, GO SOMEWHERE ELSE where you can get proper treatment.

I'll get down from the podium now...

Mike

[WG mom]

Nikki. Please update us. I am worried about you. Did you have your appointment, see a doc, get some meds? Please let us know you are okay. Hoping your pain is subsiding.