Undiagnosed arthritis is through the roof

[afidz]

I have never experienced pain like this before, and its continuously getting worse or going to new parts of my body. I wake up with horrible pains in my hips. My right hand is swollen and very painful to use. I am only 24 years old, arthritis only gets worse as time goes on, how am I supposed to deal with an entire lifetime of this pain?
I go see a Rheumetologist in the beginning of August, hopefully they figure out exactly what type of arthritis it is and I can start treating it, but once again...I can't go on Humira until I know I am done having surgery.
What does everyone else do to relieve arthritic pain? (other than narcotics, I just got over being addicted to them)

 

[KayleighMeek]

Sounds like you are having a really rough time at the minute arthritis pain can be really terrible. When I get really bad nothing really helps even pain killers they just make me to off into my own little world. There have been times when I have debated going to the hospital to get pain releif from arthritis pain as it has gotten to the point of screaming in pain. The best things I find are voltarol gel on joints it helps get rid of a bit of pain, loads of cushions and just prop myself up into a bare able position. The thing works the best for me is a really hot bath but if you are really struggling make sure someone is home with you when you do, I have got stuck a few times and needed to be lifted out.
Hopefully the rheumatologist will come up with more suggestions for you. I am also 24 and it can be so frustrating dealing with joint pain when everyone else is running around doing what they want and just a simple walk to the bathroom can feel like it takes an eternity and all of your energy. I really hope you start to feel better soon.

 

[afidz]

I'm going to try icing my hand to see if it brings the swelling down at all. I only have one ice pack and I would love to lay on it for my back instead. I think its time to invest in more icepacks. I have never heard of that gel before, I wonder if its called the same in the US. I have icyhot but that doesn't always help and then I am left with the icyhot feeling. Thanks for your response !

 

[KayleighMeek]

It might be called something else it is an NSAID gel as it has got diclofenac in it but I have had no trouble with it as you just put it on where it is needed. The Icyhot you said about sounds like deep heat we have here it just gives a funny tingling feeling for a while but doesn't seem to last very long.
Just thought of another thing I tired are cool patches you can buy they last about 4 hours and you just stick them on but I think you can only use 3 in a day might be easier than having a big ice pack on.

 

[my little penguin]

If you have a YMCA near you they have a warm water therapy pool.
DS has mild arthralgia it aslo migrates . One thing his Rheumo has him do is lots of time in the warm pool.

 

[Angela and Rylee]

I had horrible arthritis when I was in my flaring stage. Once I started infliximab (infusion) it all cleared and now I'm pretty much in remission. I have another infusion next Sunday... I hope you get into remission and all symptoms clear for you.

 

[nogutsnoglory]

Afidz I'm so sorry you are suffering so much. There could be other causes for this pain besides arthritis. It may very well be arthritis but it will be great when you see the rheumatologist to sort this out. For your sake I'm hoping its just a consequence of inflammation in the body due to IBD as that won't cause lasting damage and will go away once your illness is in check.

 

[afidz]

Ngng it is definitely arthritis, xrays and MRI'S indicate it.so I'm going to a rheumy for an official diagnosis and to see if it's enteropathic arthritis or ankolising spondilitis

 

[Kylekronez]

I have never experienced pain like this before, and its continuously getting worse or going to new parts of my body. I wake up with horrible pains in my hips. My right hand is swollen and very painful to use. I am only 24 years old, arthritis only gets worse as time goes on, how am I supposed to deal with an entire lifetime of this pain?
I go see a Rheumetologist in the beginning of August, hopefully they figure out exactly what type of arthritis it is and I can start treating it, but once again...I can't go on Humira until I know I am done having surgery.
What does everyone else do to relieve arthritic pain? (other than narcotics, I just got over being addicted to them)

Dude I'm 25 and I know you're pain. I get some of the worst leg and arm Cramps EVER. I know how opiates are. I've had Crohn's since 6 and its been a rough rough road to even figure out anything. Do the pain killers when needed. They only help when your in some seriously crazy ish otherwise just don't touch the things they are bad on us even more so than other people. I smoke pot to help most of the arthritis pains. Seriously helps more than just that Stomach problems eating problem (duh on the eating problems), even if it is illegal in your state I suggest it for us Crohns patients. You will find that it helps more so than anything. I take pentasa, and Humira and smoke some nug when needed.

 

[afidz]

I don't know if this makes sense, but my ribs are tired. I'm not sure if anyone else gets this feeling, it doesn't really hurt, just achey I guess. My back has been spasming really bad all weekend and my hips are killing me. I go to my first Rheumy appointment on Thursday. I am really nervous about it because I know she is going to touch my back and I know its going to hurt. I haven't let anyone touch my back in at least 10 years because of it. I am the only person I know that doesn't like getting massages. I am hoping she can give me something to relieve the pain without the use of narcotics while I wait to go on Humira. I just got over a slight dependency on them and I don't want to go back down that road, withdrawal is a miserable thing for anyone to go through.

 

[Mary:)]

Afdiz...I get Bio-Freeze you can get it from a physical therapy office or sometimes massage places it works really great!!

Oh and speaking of massage...I wonder if that would help.

 

[PsychoJane]

Hi Afidz,
I'm a bit late on this post but arthritic pain can be annoying...
I don't know if you found the gel that Kayleigh mentioned. Here it is called Voltaren EMUGEL. I find it helpful at times. Sometimes it helps, sometimes it does nothing then I get the tiger balm out and pretend I feel better (I've came to realize that pain is somewhat shared through my body, if I hurt myself elsewhere it kinda spread the intensity if I may say... Kinda hard to explain with words but maybe you get the idea?). Well the point is tiger balm makes my skin "burn" a little bit so it is as it alleviate the intensity of the pain on other sites. It might just be me though...

It's a possibility that you have SA well, from what you say you do have spondyarthritis of some sort. If it is a possibility for you, once you will have seen your rheumy and know more about your condition, there are a variety of physical therapy exercise that seems to help me. Now I have weeks where I have no pain so I don't know if it is the diet or the exercise.

 

[Steph13]

I have never experienced pain like this before, and its continuously getting worse or going to new parts of my body. I wake up with horrible pains in my hips. My right hand is swollen and very painful to use. I am only 24 years old, arthritis only gets worse as time goes on, how am I supposed to deal with an entire lifetime of this pain?
I go see a Rheumetologist in the beginning of August, hopefully they figure out exactly what type of arthritis it is and I can start treating it, but once again...I can't go on Humira until I know I am done having surgery.
What does everyone else do to relieve arthritic pain? (other than narcotics, I just got over being addicted to them)

Hi Afidz,

I'm so sorry for your suffering. Like you, I have experienced horrific arthritic pain--in fact, before the Crohn's diagnosis, I was told I have Behcet's disease (a rheumatological condition that effects the bowel in ways that mimic Crohn's).

For me, arthritis and headaches are the first signs of a flare. My rheumatologist injects the affected joints with a high dose of steroids two or three times per year. In addition, I use a topical prescription comprised of 10% Diclofenac cream which helps some.

I also take Mobicox (an NSAID) under the supervision of my GI.

I hope you are feeling better soon!

 

[afidz]

I do take Meloxican, which I think is the same think as Mobicox just a different name. It helps a lot but I try not to take it to much because I am in a flare right now. I am not sure what the game plan is right now, going on Thursday so we will see what happens then, thanks everyone for your responses

 

[afidz]

Unbearable pain strikes again...
I can't breath, my ribs hurt so much that I can't take in air with out cringing. My whole upper torso is hot. Whatever is going on seems to be getting worse by the day. At this point, at least until this can be managed, I have no choice but to go on narcotics again. I'm lucky if I sleep for more than 30 minutes at a time. I am exhausted all the time because of the lack of quality sleep I am getting.
I am pretty certain its ankolising spondylitis. The more research I do, the more symptoms I can relate to. But what convinces me the most is that my brother, my only full blood sibling is being tested for the same thing. His symptoms sound exactly like mine to a tee. Our medical history has always mocked one another so it makes sense to me. My brother has tested positive for the HLA-B27 genotype, I am not sure if I have or have not, but considering Crohn's is genetic for me, I am assuming I do as well. His doctors have also said that he does have Crohn's, but its not active and may never be but that he needs to be aware of it. I talked to him the other day, he said his doctors have made no further progress since the last time we talked, but he is also going through the VA and they move like molasses. I am hoping that my doctors will figure things out soon, adding this onto all my other problems, I am flat out exhausted.

 

[araceli]

Hi afidz. I hope you are feeling better. I am sorry you are going thru this. It sounds like ankylosing to me. I also have read a lot about that because of the symptoms my son has, if you are having trouble breathing ask them to do a test on your lungs, AS can affect them. I would think that with all your symptoms, your Doc. would already test you for HLA-B27. We are going tomorrow to a rehumy in Dallas again. Expecting some answers. My son also has crohn's that is not active. I really hope with all my heart that you find out soon, what it is and that you can get treatment to make you feel better.

 

[afidz]

yea, I read that the edges of your lungs can become inflamed with ankilosing and the pain that was described sounded a lot like the pain I had. I have been feeling a bit better the last few days but the rheumy's office canceled my appointment so I have to wait another 2 months! Good news is I shoudl be going on Humira very soon so that should help. Hope your appointment goes well. Are you already in Dallas? Its been very humid lately, but lucky for you it has eased up a bit

 

[araceli]

Hi, I just got back. No computer on my trip. It was humid then rain then sun and a wonderful day on my way back LOL. I am sorry about your appointment. Tests for my son were clean, so we don't know the reason for his pain. He is going to Pain management clinic in a few weeks and was prescribed celebrex. Did your pain started after or before crohns?

 

[afidz]

I have had back and knee pain since puberty, they never figured out why. But I gound out I have a 30 degree curvature in my spine. My ortho said it must of been missed when I was younger because its highly unlikely for a severe curvature to appear now in my mid 20's/ But I was tested for Scoliosis all the time when I was kid, so who knows
EDIT: I guess I didn't directly answer your question, I wasn't diagnosed with Crohn's until I was 18 but started experiencing symptoms when I was 15 or 16. So, my joint pain started just before that