pain help: About 6-7 months ago I was diagnosed with a rare condition known - Help.com

*hug*
I’ve never stopped hoping and praying for you to get better. Though I am surprised you didn’t mention your stomach problems, how are those? And what of the doctor who should have been dropped in a river?

Is arthritis hereditary? Yes, my prayers I offer to Puck. Sorry you are going through this.

Daft Puck my prayers are with you I kow that Rheumatoid Arthritis is a bad one .
I taught classes for artritis warm water is the only way to go it helps the most. The Y usually has classes you can take good luck
God Bless

Wow! That must be incredibly frustrating to deal with! I’ll keep you in my prayers! Hang in there…

My gosh you go through too much Daft! I hope and pray and WILL have my fingers, toes and everything else I can cross for you that this is NOT Arthritis!

An Affirmation to say aloud everyday which may dissolve any possible ailments …
“The Light of the Christ now floods my consciousness dissolving all acid thoughts. I love everyone and everyone loves me. I give thanks for my radiant health and happiness.”
Love lots, Fx

I was really hoping that the wrist troubles were behind you, not doubled! I’ll be hoping that it isn’t chronic and that you get well soon.

crossing my fingers. i really hope you get some good news about your situation soon.

Hi Daft.

My fingers are crossed for you and my heart goes out to you to. I wont say I know how you feel, but I have a very similar worry.

I dont know if I told you before that I had a surgeryon my foot to cut out one bone and split to others to allow me to have better mobility. I was in the hospital for about 4 months. The trade off is that the fear of arthistis is very really. I oftern ache and recieve an upkeep day “surgery” treatment every 4 months. I am rambling, but I just wanted to share that you have someone who has a similar worry.
My left joints, wrist, hip, anckle and the flexors in the top of my foot are being monitored.

I know its a worry, but its not a for sure thing. I think that you being aware is a great thing. You are such a stong person and in what you hae shared about going to all yuor doctor appointments you always seems to find such positivity. And you have so many people here too that look out for you and care about you.

I know ou didn’t ask for advice, and yuor doctor knows better then me. But the simplest advice I was given was to strech… and that what ecer you are steching do it for at least 10 seconds… and calcium w/ Vit D for your bones, and foods that have good oils to keep your joints lubericated.

I truely wish the best for you.

You are in my and my family’s prayers. We are staying positive and believing for you to have a full recovery.

Wishing you the best and God bless.

May the storm of pain end, and the brighter days return. Best Wishes 4 U :)

Hope everything gets better soon, fingers crossed! :)

I’ll have my fingers crossed for you Daft. I hope everything goes well *huggles*

My dad had unbearable pain in his elbow at all times from arthritis. He was a real doc so he just used to buy the codeine pain pills in the 5,000 count bottle and eat them like candy. Then he read that a bee sting would help him. I caught a bee for him in a plastic cup and he held it against his elbow until it stung him several times. Believe it or not he said he felt immediate relief, and that was after being stung by a bee several times which I thought would hurt like crap. For the rest of his life he kept bees and stung himself every day at least once.

Don’t know if it applies to your situation but just a thought. I am really sorry about you having to go through this and hope the doctors can finally help you. Also we all really appreciate you doing the lions share of the mod duties. I guess Courtney fell off the face of the world after the hurricane or earthquake whatever it was…

Stop believing in your health problems, believe in the fact that a human body is a remarkable biological machine that can repair itself and finction even when damaged.
And the mind is a control center, the more you think about health problems the wirse your health is. Te same thing applies to pain, when you’re afraid of the pain and when you believe that it would happen the actual feeling of pain gets magnified simply because you’re focusing on it. Stop focusing on the pain and it will severely weaken, same thing with illnesses. Stop focusing on them or even better - stop believing in them and chances are your body would stop being in pain and start regeneration.
:3

.Eli. wrote:
Stop believing in your health problems, believe in the fact that a human body is a remarkable biological machine that can repair itself and finction even when damaged.
And the mind is a control center, the more you think about health problems the wirse your health is. Te same thing applies to pain, when you’re afraid of the pain and when you believe that it would happen the actual feeling of pain gets magnified simply because you’re focusing on it. Stop focusing on the pain and it will severely weaken, same thing with illnesses. Stop focusing on them or even better - stop believing in them and chances are your body would stop being in pain and start regeneration.
:3

I know that I haven’t been here long and all, but I can honestly say that I do not believe that Puck is someone who is focusing on her pain. She is trying incredibly hard to live her life in spite of her pain! (As a person who also has many health issues- I respect and commend her for that). You don’t see her putting posts up wallowing about how crappy she feels- do you? She is fighting! She is doing everything she can to remain functioning despite the fact that she’d probably prefer to curl up in a ball and cry 24/7.

Forgive me, but all that just sounds like a lot of naivety. You can’t just “stop believing in pain.” I don’t buy that for a second. Its a lovely idea and all- “mind-over-matter” and the what not, but it only works to an extent. Our bodies feel pain for a reason. It is a signal from the body to the brain that something is wrong. When you ignore that you deny yourself the chance to get better. That is like placing your hand on a stove and saying “it doesn’t hurt.. so I’m not going to remove it.” Okay.. so you’ve convinced yourself it doesn’t hurt… that doesn’t stop the fact that you are burning your hand off and permanently damaging it.

I wish nothing but the best for you, Puck.

The reason your doctor so hard on you is probably because he doesn’t know what to do. Doctors don’t like the concept that there are things they don’t know.

I know you’re smart and aren’t about to let people take advantage of you and I know that you’re not imagining your pain. Stay tough.

Puck.
There is a clinic in Denver that specializes in Kienbock’s disease. Here: http://www.shcdenver.com/tabid/9521/m…

Steadman Hawkins Clinic Denver

8200 E. Belleview Ave., Ste. 615
Greenwood Village, Colorado 80111
Phone: (303) 694-3333
Fax: (303) 694-9666

Steadman Hawkins Clinic Denver at Lone Tree
10103 RidgeGate Parkway
Aspen Building, Suite 110
Lone Tree, CO 80124
Phone: (303) 586-9500
Fax: (303) 586-9490

Bad news… Kienbock’s disease is a progressive condition that gets worse over time. There is no cure for Kienbock’s disease. However, surgical and nonsurgical treatments can relieve symptoms, maintain motion, and sustain wrist function.

Good news… They take online donations if you want to help Puck and others.
https://www.sprivail.org/donation

And if you can please pray. Prayer works. Believe it. Believe IN it. God can heal her. He needs to hear from all of us. So please please pray.

Thanks.

Your welcome. =8^}

And if you want to donate but can’t do the online thingie here’s the snailmail address to send a check:

Steadman Philippon Research Institute
181 West Meadow Drive
Suite 1000
Vail, CO 81657

WHOA!! Pucky, I’m so sorry, If there’s anything I can do for you, if you ever want to chat or anything let me know and I’ll be here for you.

hey…hesh puckster….your just falling apart a little more every day. im sorry to hear you have more problems. and i wish you all the best girl. I hope you do feel much better one day.

Aw, Puck. I’m so sorry to hear about your other wrist and poss arthritis.

I hope that your stomach procedure goes well on the 8th!

Keep us updated

It’s so confusing sometime what to do when you are sick and medicine didn’t do that much work for you health..my dad got heart sergry twice and now they still getting pains in there heart and arms ..in night when i`m sleeping he came to me and say dyal get up son :( i`m not fine i have so much pain in my heart and in my arm and belive me i don’t know what to doo every time i said dad we will go to doc tommorow and he will say okey…but next day he said hey i`m fine now leave the doc i say no i have to do this but he didn’t agree with me….. [ i think hes afraid of doc’s treatmeants ]

i don’t know how i can help you here you are thousand of mile away from me i`ll pray for you.

May God Gives you Strenght to take Right Desicions and He Give you his all grace and happiness always.

Time will Change soon …never loose your faith and never give up you will be fine.

- D

Sorry to hear that Daft. Keep up the good work, love and respect for pushing on.

Seeing as you may be seeing the Doctors alot thought I would give you some really bad doc jokes

Doctor Doctor I swallowed a bone.
Are you choking?
No, I really did!

“Doctor, Doctor, You’ve got to help me - I just can’t stop my hands shaking!”
“Do you drink a lot?”
“Not really - I spill most of it!”

Doctor: I have some bad news and some very bad news.
Patient: Well, might as well give me the bad news first.
Doctor: The lab called with your test results. They said you have 24 hours to live.
Patient: 24 HOURS! Thats terrible!! WHAT could be WORSE? What’s the very bad news?
Doctor: I’ve been trying to reach you since yesterday.

A young woman went to her doctor complaining of pain.
“Where are you hurting?” asked the doctor.
“You have to help me, I hurt all over”, said the woman.
“What do you mean, all over?” asked the doctor, “be a little more specific.”

The woman touched her right knee with her index finger and yelled, “Ow, that hurts.” Then she touched her left cheek and again yelled, “Ouch! That hurts, too.” Then she touched her right earlobe, “Ow, even THAT hurts”, she cried.

The doctor checked her thoughtfully for a moment and told her his diagnosis, “You have a broken finger.”

A psychiatrist gives me some pills and says, ‘Take these and you’ll feel much better.’
I reply ‘But there’s nothing wrong with me, it’s the rest of the world!’
He says ‘Yes, I know, but it’s easier for you to take the pills than the rest of the world.’

So sorry about the lamness of them all :)

Wishing you peace, love and strength, my friend. You will be in my thoughts and prayers. I hope things start improving for you very soon.

Hang in there Puck. I know you’re made of superior material and you’ll get through this. You are in my prayers :)

*Hugs* I really hope that you’ll get better than before and i will pray for you as well, just don’t ever give up, i know you’ll get though this, you’re stronger than this and you know it! Best of luck and hope to hear from you soon. :)

Best of luck on this, Puck. I’d send you all the luck I have but I think I ran out after my incident. Still though, here’s to hoping that it isn’t arthritis :) You need to take better care of yourself :P

I will ask God to help you through this tuff time , God Bless.

I’m sorry, Puck. I wish there was a sovereign remedy for everything. I hope you can begin to feel better soon. Hang in there.

Fingers crossed for you Puck.
You have been through so much already. I wish all to turn around for you!

Puck I hope the hell you don’t have RA. You’re one of the best people I know. You deserve a break.

Crossing my fingers hun, continue to keep us updated.{HUG}

I don’t even know what to say. I’m upset, like so many others I think it is wrong that you have to keep going through this ****. I’m thinking of you, I’m pulling for you and I am so very sorry. you have a lot of support puck, and you deserve it.

Hello!
Oof, i realize this post is almost two weeks old and you have received a bunch of replies, but i wanted to write you a little something.
about 9 years ago, i was having some really weird and painful symptoms. i was getting raised, painful rashes, swelling in my joints and lymph nodes, and others that i can’t recall anymore. it took a year for a diagnosis because my rheumatoid factor kept showing a negative. luckily my dad, who is a doctor, was able to pull strings and took me to literally every and any kind of specialist. we got so desperate for an answer that we finally went to a rheumatologist (even after the negative results from the blood tests) and she ended up giving me the diagnosis of jra… but it went one step further to diagnosing me with a super rare form of jra (which is already rare in itself) called still’s disease. i also literally had every rare complication associated with jra/still’s. i have literally lost count of the amount of times i’ve had to be hospitalized after 300. just within the past year, my rheumatologist has started referring me to orthopods to have joint fusions and replacements done, and i am only 23. i have had my right wrist fused and my left wrist replaced. i’m scheduled to get my right knee replaced in about a month, followed by my right shoulder. after i heal from those two, my left knee and shoulder will be replaced. the icing on the cake has to be a new diagnosis of lupus… so, hun, i know what you are going through. :0( and it sucks. no, it beyond sucks. i live in chicago, and with the changing of the weather, my sed rate has been out of control. my doc has me on chemotheraphy and another infusion called actemra. it’s a biologic. i’ve literally been on every fda approved and multiple experimental medications on the market. each one (if i wasn’t allergic to it) worked for a few months. i’ve been on methotrexate too– i really do hope you never have to be put on that… or if you do, you can take the oral form. i’ve been on every single available pain medication.
my heart goes out to you, it really does. if you ever have any questions about medications you’re on, or you and your doctor are thinking about, feel free to ask… chances are, i’ve been on it.
i know it’s easier said than done, but keep your head up. i use humor as my crutch. my friends and i joke that i am becoming a cyborg. when i was released from the hospital after my left wrist replacement, my friends threw me a cyborg party instead of a “get better soon” party.
i feel you on your statement of “It really seems like, when it comes to my health, if it isn’t one thing it’s another.” it sounds bad, but i am literally just waiting for my docs to tell me i have cancer. i never get surprised anymore when doctors tell me they found something else wrong with me.
i’ve lost the ability of crossing my fingers, but i will try anyway. it pains me so much to hear about people who are in pain or that they might have the possibility of being diagnosed with ra — or really, any type of arthritis. you have all my thoughts and hopes that what is going on with you is just some kind of fluke.
seriously, please email me if you need anything. even if its just to chat. *virtual hug*

You can live with arthritis there are things you can take, exercises you can do. I have arthritis and I take an over the counter drug that helps with the pain. I took classes for arthritis then became the instructor for the same classes and taught others to help themselves. Warm water classes given at a the Y and other gyms are the most help but need to be done almost every day. I have had arthritis for over 20 years so I know what I am talking about. Weight control also helps with arthritis. Glad to hear you don’t have Lupus that is a bad disease. I have one of the diseases related to lupus and have family member who has lupus.
You just have to keep going. One day at a time

my dearest puck!,
to me, the worse words a doctor can say is “it is not a matter of IF i’ll get arthritis but WHEN.” although my diagnosis wasn’t cut and dry as that statement, but once they landed on the RA, the statement was altered to “it is not a matter of IF i’ll get all my joints replaced, but WHEN.” my original rheumatologist predicted my wrist replacement and fusion to happen at the ripe age of 25+ but happened at 22 (fusion) and *almost* 23 (replacement) — that surgery happened a month before my 23rd bday. now my docs/surgeons are looking at replacements in my shoulders and knees (which are the most pressing) and then my elbows and hips afterwards… which ankle replacements thrown into the mix.
i totally agree with Ihope for happiness: you just have to keep going. one day at a time. that is my daily mantra. (i’ve probably already said this) but i try to stay as light hearted as I was before the Ra, then the lupus, and now the lymphoma — i like to joke about getting so many replacements, and whatever artificial organs available, that i am becoming a cyborg and i am the ultimate bouncer (with the titanium wrists)
feel free to email me to chat (on gchat or just through email) because i want to be there for you. ;0)

Daft, I will keep you in my thoughts and prayers.

Do you have a juicer or a juice store nearby? Please try a wheat grass shot every day — in the morning and evening, and see if you get any improvement. Just try it–I’m not making any claims. Word of caution: it’s an acquired taste. But I don’t care because I love the way it makes me feel after I drink it.

All the best to you, Daft. :)

My thoughts and prayers goes to you as well.

I can relate to how you feel about pain, thought what I have is entirely different and my neurological pain is not as severe as it was a while ago. It is hard to keep track of symptoms and pain because it’s better to try to forget and do what you are most capable of at the moment.

I am lucky that I have found someone that pulled me back on the verge of death and kept me off painkillers, and am looking at possible recovery, other than the fact that we are looking at WHEN (which no one knows) will it happened.

So don’t give up, you never know, you might discover someone that can help you recover. One day at a time! Msg me whenever, you want to talk.