[Grey Matter]

I have a feeling my pain is greatly effecting my mental illnesses, as I am in one long damn flare up and my moods could not be worse.

I was diagnosed with Adult Onset Still's Disease, which is a rare type of arthritis. I get fevers two/three times a day (from 99f to 103f). My muscles constantly ache and feel like I have the flu. My bones ache too. I can't lift, turn my wrists (it attacks the wrists and elbows first) and walking now causes a tremendous amount of pain.

I was on prednisone. But since I had emergency surgery, they took me off. Since then I have only been allowed to take Tylenol. It. Does. Nothing. I cannot get rid of the aches and pain. I just want to lay in bed and cry every morning because I literally cannot move (and my pain threshold is HIGH, after surgery I didn't even take pain killers). But this pain is debilitating. And, besides my RA doctor, NONE OF MY DOCTORS EVEN KNOW WHAT STILL'S IS. So they just assume it's in my head and tell me to use OTC creams.

Which do nothing.

I have no idea what else to do. I start work again on the 27th and it's a 15 hour shift and I KNOW I am not going to make it through. I am just so tired of this.

[ptangptang]

I'm so sorry Teen. I don'r know what to say except that i'm here if you want someone to talk to and i'll try and make you laugh . They should prescribe laughing at the doctors. ( well not actually AT the doctors) , oh i don't know though haha. What would Simon do. Make a routine out of it no doubt. Laugh and the world laughs with you cry and they give you anti-depressants.

[gayleggg]

I'm so sorry you are in such pain. I think it would definitely make a difference in your mood. I hope you have a good day when you go back to work. I think you are very strong and can make it, but if you don't it, it would be very understandable. My Mother had rheumatoid arthritis and was in a lot pain but sounds like yours is much worse, but they, at least, gave her pain medication. I hope one of your doctors give you something.

[winter4me]

Have you contacted your RA doc? If not, please do, there may be something that can be done to ease your pain....I am so sorry you are suffering; and of course physical pain affects your mental health...wish I had a wand...

[Grey Matter]

Originally Posted by ptangptang

I'm so sorry Teen. I don'r know what to say except that i'm here if you want someone to talk to and i'll try and make you laugh . They should prescribe laughing at the doctors. ( well not actually AT the doctors) , oh i don't know though haha. What would Simon do. Make a routine out of it no doubt. Laugh and the world laughs with you cry and they give you anti-depressants.

I can at least laugh with my RA doctor haha, I went in last week for a check up (I go once every other week) and she did the normal short physical of my fingers, wrists, and elbows. She got to a particularly bad part of my elbow and I actually whimpered in pain and she said "You have a tennis elbow, are you hiding something from me?" and it turned into me claiming I've been practicing to get to the US open. She tries to make me laugh because she knows it's hard to deal with, and I really do think she is a fantastic doctor. When I am with my family I try to do the same thing because I know it upsets them seeing me struggling. So I'll say "The old person over here needs help" or "these hips can't dance like they used to" and at least they get a laugh. I can't change the situation so I may as well laugh at it, eh?

[Grey Matter]

Originally Posted by gayleggg

I'm so sorry you are in such pain. I think it would definitely make a difference in your mood. I hope you have a good day when you go back to work. I think you are very strong and can make it, but if you don't it, it would be very understandable. My Mother had rheumatoid arthritis and was in a lot pain but sounds like yours is much worse, but they, at least, gave her pain medication. I hope one of your doctors give you something.

I am just scared that I am going to get on this shift and need to leave after 5 hours. I worked training times of 3 hour shifts and I came home crying because of my hips. I am so embarrassed that I just got the job and they already had to put me on a leave (one for the surgery, which continue when I did a short stint in psych IP). I have to get a load of blood work done at the end of the month and my RA doctor said that she will figure out if I would benefit from oral medications or infusion treatments. Thank you for the hug (((gayle)))

[Grey Matter]

Originally Posted by winter4me

Have you contacted your RA doc? If not, please do, there may be something that can be done to ease your pain....I am so sorry you are suffering; and of course physical pain affects your mental health...wish I had a wand...

She knows everything that is going on. Its just a matter of waiting, sadly. The waiting is the worst. I am too tired to wait like this again and again and again.

Thank you, dear. You're always so kind to me.

[sabby]

I have osteo-arthristis and fibromyalgia, so I have some idea of the pain you are experiencing, but I know it's not exactly the same. Pain is pain though, so i can definitely get some understanding. I'm sorry you are suffering so much.

I did a bit of research on Still's and found the following as possible help with your pain levels. I hope it's something you can talk with your doctor about.

Nonsteroidal anti-inflammatory drugs (NSAIDs).

Over-the-counter NSAIDs, such as ibuprofen (Advil, Motrin IB, others) or naproxen (Aleve), may help with mild joint pain and inflammation. Stronger NSAIDs are available by prescription. NSAIDs can damage the liver, so you may need regular blood tests to check liver function.

Steroids.

Most people who have adult Still's disease require treatment with steroids, such as prednisone. These powerful drugs reduce inflammation, but may lower your body's resistance to infections and increase your risk of developing osteoporosis.
Methotrexate.

The medication methotrexate (Rheumatrex, Trexall) is often used in combination with prednisone, which allows the prednisone dose to be reduced.
Biologic response modifiers.

Drugs such as infliximab (Remicade), adalimumab (Humira) and etanercept (Enbrel) have shown some promise, but their long-term benefit is still unknown. If other medications haven't worked, your doctor may suggest trying anakinra (Kineret) or rituximab (Rituxan).

This is from the Mayo Clinic's website here - http://www.mayoclinic.com/health/adu...ents-and-drugs

I'm on disability due to my dx and pain levels. I can't do the work that I would love to do. I am a support person for those with developmental disabilities/mental health issues/physical issues. I loved this job and it really bothers me that I can't do it anymore. I really hope you will find a way to get through your work days. I'll keep you in my thoughts and prayers!

[Grey Matter]

Thank you for the info! I was on steroids, and god they worked and it was wonderful and I wasn't tired ALL of the time, but now everyone was in a fuss and after the surgery I am just off of it. And I am so annoyed by it.

I applied for disability but was denied. Which angers me to no end. Their advice? Work more. Oh wonderful, I am applying to disability BECAUSE I AM DISABLED, but okay I'll work 15 hour shifts. ugh.

I am glad that you gt on disability, maybe you can volunteer some where! My mom did the exact same thing when she became physically disabled and volunteering lifts her spirits.

[sabby]

Awww, I'm sorry you were denied disability. Did you get yourself a lawyer after your denial and try to fight their decision? It's not unusual to be denied your first go round with disability. As a matter of fact, I have a link for some really good information that may help you in your quest for disability. If it wasn't for this information, I probably would have been turned down as well, although I believe my age helped greatly with their decision as well.

Don't start your claim unprepared!!! - NeuroTalk Support Groups

This is posted at our sister site NeuroTalk. There are other threads in that forum that you may find helpful as well.

Volunteering is a wonderful idea, and yes, I have considered it. I'm hoping that maybe next year I'll be able to do that but as for now, I honestly don't have the energy or brain power to do much of anything it seems.

Hang in there Teen.....I'm keeping you in my thoughts and sending positive vibes your way!

[roads]

I am in great empathy with the pain you're suffering, and tend to agree from my own experience that it intertwines with any co-existing mental illnesses. I've had osteo-arthritis in my back and neck since my teen years, and now at 67 it's everywhere. Plus the neck vertebrae are so inflamed at this point they're crushing the spinal cord--causing much false pain and numbness.

For decades I got nearly total pain relief from acupuncture. Have you tried it?

It's quit working for me, maybe because now I have a high level of blood inflammation. I can't tolerate steroids (destroy my digestive system), can't take any prescription pain killers (sends me straight into psychosis).

As the physical problems worsened, the bipolar disorder (that had been going along with minor tweaks, staying pretty well balanced for years) became less stable. I'm bipolar II & have never been manic, but now I'm beginning to rapid-cycle between hypomania & depression ... and the depressions sometimes dive very steeply down fast!!

My psychiatrist is convinced this is all a function of the pain, and I see him every two weeks now. Before this situation, we met every three months.

If you haven't tried acupuncture, please investigate it. Take care.

Roadie