Just need to bleed off some pain and misery.

I have a lot of pain in the neck/head region now. It's been like that for a couple of weeks.

Hmm..lets see.

Neck is more or less cronic burning pain. Yeah, it feels like it burns, and its very high up, top joint/atlas joint if I'm to guess. That has been on and off for 2 years, but it's more lately.

The top of my head, well, especially towards the evening, it feels like every small muscle is permanently tensed. It gives me a very strong pain, and cold will excaggerate the pain a lot. I gets bad enough to feel like my hair hurts.

My ears and jaw, wich has been a cronic problem for me for 16 years now, are worse. That means a feeling of pain and sore fullness in the ears, and far far in. Wich makes sence to the next thing:

Balance gets affected. This is a key element, as THIS was what originally 16 years ago was misinterpeted by my doctors (and consecutively me) as anxiety. I dont fall over, I just can feel that balance and coordination is affected. It's often accompanied by a dry and painful feeling to the ears, and sinus regions. And it has started to hit the facial nerves, in such a way that I get non-mistakable nerve pains in temple and face. They are Horrible, absolutely horrible. And I do get a feeling that nerves in arm and leg on the side ear is affected is affected to. Supersensitive to cold/heat, and altered sensation. Luckily short bursts of it.

I have an infection in my nose. I have had it for almost a year. Initially it wasnt so much and I thought it was due to some infammatory condition. It got worse, and I saw my GP about it. He had one look and prescribed an antibiotic. It helped a lot! -And joint pains felt a lot better too to be honest. But it popped back once I finished the antibiotics. He didnt react to me telling him it was back. I'm going to bring it up with my physica medicine doctor when I see her on the 23'rd. I get green gooo and blood each time I blow my nose. both nostrils. And then my neck hurts so much afterwards, has to be some kind of refered pain, I dont really feel too painful in the nose when I do it.


If I could just win a lottery so I could at least stop working for a few years to take care of myself better and get this under control....*sigh* I guess that would be the fatigue and tiredness talking.

I'm really looking forward to that doctors appointment the 23'rd. I am going to bring up the nose and get antibiotics for it, and I'm going to literally beg for her to let me try a prescription for a short prednisone taper to use when I flare at its worst, both for relief and to help diagnose this as rheumatic in nature.

Love
gilth

Gilth, try looking into Multiple endocrine Neoplasia (thyroid, parathyroid, and pituitary).

Hugs
Gerri & Makaylah

gilth,
My friend, it is a rough and rocky road we travel. There is heartache and pain that seems to want to put us down. But you can do this, keep trying the method of treatment that works, and try again.
If I won a big lottery... pay off the house, go to two doctors that I think would help..... adopt 12 kids with Compassion International.... set up a small bank her at KA and loan interest free to qualified members... buy a 5th wheel so we can see the kids.....
I would start a new Church...... with recovery principles and training that leads people to self control and financial stability.

of course, gilth, I would help pay for your medical recovery tooo....

hope that doctors appointment goes well!

in hind sight (being 20:20 and all) i wish a doctor had had the insight to give me a pred taper years ago. all that suffering, for what? i don't want to see anyone else suffer like that.

also, a good PT, a good chiro, can help with the physical symptoms as well.

though (for me) its the inflammation that is at the root of it all, the muscles spasm in response to the inflamed entheses, and spasming muscles weaken, causing them to spasm more readily. can be a downward spiral. PT and chiro have helped pull me out of that swirling drain when i've needed it. tendons and ligaments, when they become inflamed, can get torn, can get strained, can form scar tissue; all of that needs to be addressed as well.

for me its a two pronged approach: get the inflammation under control and address the physical musculoskeletal stuff.

thx Gerri

I'll look into it although at first glance it didnt strike me as something that fits.

Love
gilth

Yes Lon, I agree totally. And I believe every step of it makes me a wiser, kinder and better man. I'll take the luxury of believing that, I think I've earned it. I have never been broken before, I'm still not certain I ever can be, but the idea that there is a chance this disease could break me away from work and stability, it still gives me the chills now and then when I'm at my lowest.

Of course that is what you would do with a lottery price, it's the man you are! -Come to think of it, I think we would find there is a higher percentage of people in here willing to do something like that, than most any other place I can think of. These pains teach some values and love it's hard to aquire without Can you remember a single man or woman in here that the disease seemed to make meaner?

Love Lon! -this place is so much richer for you being here, and I know how much you hurt at times, and still you persist! -Faith is a wast pool of superpowers to draw from, where would we be with none?

gilth

Yeah, I have a similar approach, and I learned it when I got panic anxiety.

I was admitted to a psyciatric treatment facility as a youngling (barely turned 20). Initially it was the balance problems mistaken for anxiety, but being handed the unfortunate kind of medicines gave me my first real panic attacks, in a force you can not believe.

I was admitted to a small hospital with patients that had been revolving door patients in the system for decades. Those very patients used to "ground" new patients that thought they were the hardest hit ever by saying; "You don't have anxiety. gilth over there; HE has anxiety."

When you are that far hurt, you can not begin to heal without some aid. And in that case aid meant medicines to get me at least up to a point where I could work with myself.

I can't see how now would be any different. Fatigue, pain, uncertainty...it pushes you far enough down in the end, you need a break to begin to deal with it. I'll use short bursts of Prednisone any day, if I have to and it has the desired effect,despite knowing the possible sideeffects, if I know it will buy me relief time and energy.

The thing that strikes me the most though...I know there are a lot of younger persons in these forums, but me being 37, and knowing a lot here are older, and hurt so much more than me and have for so many years...In my heart you feel like heroes.

Wich is funny, because they say there are no more heroes these days. How wrong they are!

Love
gilth

I'm in. I don't play the lottery but I say you deserve a linning lottery ticket. Not a little lottery but one of them mega-mega lotteries whereafter the government takes its 55% or so taxes you still have too many millions to count for a year or two. Then once you count it you can't start squandering it.

Money squandering can defintely distract one enough to deal with AS pains. Keep a harem of PT's, massage therapist, and shaman at your beck and call to keep pains in check. Clerical staff to file claims for disability and other claims for entitlements and when they are finally approved, you pull a role reversal and reject them. Tell them thank you but after detailed reviewed by your accpetance committee you find that there money is not qualified to be added to your piles and piles of money.

Then of course you throw an AS party of some sort. (Hey you fot piles of money and it doesn't hurt to ask.)

In the interim I hope Doc appt helps a bit. I will talk to Bruno and see if he's got a guy whon knows a guy who has an in with winning numbers.

This had me cracking up, what a wonderfuil wonderful day that would have been



Why go small? -I'd just rent me a passenger jet for a couple of days and go around and pick you all up!



Tell Bruno I would literally owe him a lot And aye, I'm looking forward to it, I dont think I can be so dissapointed from this one. I do have that nose infection, so antibiotics, I will get, and if I'm really lucky I'll get a try at prednisone as well. She did say the last time "you can't go around in this much pain, we have to do something about it", so we'll see. I can't see how a test on prednisone could possible be more harmful than very strong pain killers, wich would be the only other option as far as I can see.

Thx for the laugh, I needed that!

Love
gilth

Steve,
you gotta quit posting like that; you had us all right there with you, winning, and then beating the feds and then traveling around visiting people and feeling real good while we do it!!

As a man of law, we expect you not to lead gilth or any other ASer down the yellow brick road,unless of course there is a yellow brick road, and then I want to be first, ok???

shesh, we should not have to go over this annually; straight and narrow steve, straight and narrow...