| I'm new to this board, but I have been on here before reading and have received great information. I really need help with what's going on with me. I am 31 years old and have RA and Palindromic Rheumatism and hurt all the time. Each day I wake up I never know hoe I'm going to feel. I have a 4 year old son who I can never play with cause I'm always hurting. Today it is in my feet and can not walk without help. Some times it's in my hands and can't open or close them and when it's in my arm I can't raise my arm up to even put on a shirt. There are many times when it in my knee and it feels like the ball in my knee is turned and hurts like crazy. Is there anyone on here that goes through this as I do at my age? |
My RA started when I was 46...very similar symptoms to what you describe. The good news is it's much better now...6 years later. What RA meds are you taking?
Alan
Hi Suntan...welcome!
You should let your doctor know how you're feeling...maybe your medication (if you're on anything?)needs to be adjusted? Don't hold anything back, let your doctor know how bad it's been for you.
Suntan! My sista! I'm Palindromic!
How old were you when diagnosed? My baby was 5 (she's 6 3/4 now). It's why I tried so hard to find a way out of this horror. She needed a mommy to play with. How far apart are your attacks now? What meds do they have you on!
Hang on, it does get better!
Pip
Girl, throw that age thing out the window. It doesn't mean squat to this disease!
I agree with Alan and Kelstev - I don't think your meds are doing what they need to. You really shouldn't be in pain like that!
What ARE you taking?
Welcome Suntan
I hope you are getting proper treatment. If not, please visit a rhummy doctor right away. Treatment does sometimes take a while to take effect, so please be patient and watch your meds. If they aren't working or you have bad side effects, be sure to tell your doctor.
You will find many people here are somewhere close to your age. I am 35 and was diagnosed about 3 years ago. Sadly, more and more and more young people even in their teens are becoming sick with this horrible disease. It is very sad.
My kid was luckily 11 when i got sick, so she was able to help when needed along with my husband, but i sometimes helped take care of family member's kids and had to wear hand braces in order to pick up the kids etc.
I will tell you, at the beginning it will "not" be easy. But almost everyone will eventually find the right medications. Most people who do find the right ones, don't post online, so you may not see how well many are doing. But three is hope, there are lots of drugs out there to help.
I wish you well and a quick recovery.
Welcome Suntan ~~ I think everyone here has had your experience in some form or manner or level. We are each an individual snowflake with our disease and yours will be your journey to travel.
I always wondered (pre-diagnosis) why I woke up everyday feeling different. Everybody else seemed to wake up exactly the same. Then I found out that when you have an autoimmune disease, it never sleeps. So while we are sleeping, it's having a party. And you wake up the next day uncertain of what the outcome of last night's party is going to be. Somedays its horrifyingly bad, and others when your meds are working are pretty good.
I think we are a box of Gump's chocolates. Be kind to yourself. Take care and keep posting. Cathy
JSNM, that was a great way of putting it. Like the disease has a party every night! I so get that! Mine has drug parties, I swear. Wild, out of control, call the cops parties....LOLGuys,
Palindromic is different. Seriously, I'm not talking who's pain is worse, because we know how bad it can get, but we're known for the "Please, somebody kill me" level of pain. We have different genes that activate and there is research out there that says the Palindromic people are better at trying to isolate the 'joint'. Isolate, hell. All I know is I dreamed of sawing my shoulder off.
My rheumy told me that most drugs don't work on Palindromic. Thank God he was wrong because they do. But it's his saying that that got me motivated to find another way.
Pip
Welcome Suntan, we can relate to how you're feeling. SOmetimes it's just my hands, sometimes just my back and then when it's really bad my entire body hurts. Have patience (I know how hard it is) your doctor will have to come up with the richt combo of medication to help you. Hugs to you, WendyThe medications I'm on are not really helping at all, they are Nabumetone and Felxeril. I have been on them for over a year and never seems to get better. I am going to a new rummy on Feb. 6th and hope this dr can do more for me. Pip you are very right about Palindromic being very different and hurts soooo bad.Hi suntan! Welcome to the board.
So, can someone tell me what is Palindromic Arthritis? How is it dx'd? I've never heard of it. I can't imagine having worse pain. I'm sorry your pain isn't under control.
Phats
Disregard my last post...I see that Pip! answered it on another post! Thanks! WOW, sounds terrible.
Phats
Then the doc's just pat you on the hand. There, there.
Does anybody wonder why I'm so angry about this stuff?
:-)
Pip
Suntan -
Check out Peanuts "Hey Pip" thread.
Hugs,
Pip
Hey Suntan, I do know how you are feeling really we all do. When I first got RA I was 33 . I had no idea why I could not walk without sooo much pain and it moved so fast through my whole body. My husband had to feed me because I could not move my fingers or my arms I could hardly even chew my food . Every part of my body was in pain even to walk was hard. But getting an RD was the best thing . He had the pain gone in no time and has kept me going pretty good for 10 years. Any problems I call him and he gets me in right away. Good luck to you , there is good help out there it will get better.Hi Suntan
I was diagnosed with Palindromic Rheumatism (PR) nearly 7 years ago now by my Rheumy and spent most of that time trying to cope with painkillers which only just took the edge off the pain. Over the last couple of years it has become more persistant and settling in certain joints. Nobody really took my condition seriously until about 3 months ago, after noticing some joint changes in my Hands & Feet. My Rheumy then told me I now have sero-negative RA. I started a course of Plaquenil also 3 months ago and I'm starting to notice an improvement. I know it does take a few weeks for the meds to start to work. I'm not absolutely painfree but get hardly any fleeting pains now!
If you have been on your meds for quite a while it might be worth asking to change to something else. It is a miserable exsistance trying to cope without.....I've been there!
By the way Plaquenil is one of the Disease Modifying Drugs (DMARDs) and is the kindest for side effects. Might be worth a try!
Hope you get some relief from the horrible pain very soon and are able to enjoy life again with your young family.
Hugs
Min x