Weird pains

[mcate238]

Hi,

I am having a hard time and wanted to see if anyone else had been through anything similar.

I've been on Humira for 5 years, also on Paxil (20 mg) and Entocort. For the last ~2 weeks, I have been running a low grade fever. I have had Crohn's 13 years and have never run a fever from it before, so I assumed it was staph which I constantly suffer from, but doc told me today it is the Crohn's. I have also been having weird pains throughout my body that I've never had before either. The pain transfers from in my legs, to my butt, to my back, randomly. It's not always there but it is pretty annoying. It's not concentrated in my joints like what usually happens with Crohn's. I feel like it's in my nerves or something. Does anyone else have symptoms like this? I just find it bizarre to have such a change when none of my meds have changed or anything.

Thanks!

 

[afidz]

I get pains in my back hips and legs, doctor thinks I have enteropathic arthritis (comes from IBD)
Also, with the lowgrade fever there may be an infection somewhere in your gut. A combo of Flagyl and Cipro can help that if thats what it is. Where do you normally get staph infections? Have you had blood work done recently?

 

[mcate238]

Thanks for responding. I'll have to look into that. Ugh I hope I don't have an infection in my intestines. I hate Flagyl and Cipro. I carry staph in my nose basically constantly. I use topical medicine mostly and then antibiotics when it flares up badly. I had bloodwork done a week ago and everything came back normal, which is frustrating when I feel so poorly.

Thanks!!

 

[mcate238]

I'm starting to think I'm developing enteropathic arthritis. It fits in with the progression of my disease. Very frustrating. From what I've read, they treat it with Humira--I'm already on Humira so I don't know what they'll do for me if that's what it turns out to be.

 

[afidz]

Best thing to do is get a referal to go to a Rheumatologist, they can properly access you and figure out what exactly is going on with your back and legs. Maybe prescribe something else for that if Humira seems to not help

 

[nogutsnoglory]

We are going through the exact same thing right now as I'm having sharp pains, zaps and weird sensations throughout the body that I don't understand. I have seen a neurologist and will be going through a series of tests. I am also seeing a rheumatologist. I would recommend those two specialists to help you get a better handle. One possible problem to consider is fibromyalgia. You are welcome to check out and participate in our IBD and fibromyalgia support group. It's a very hard illness to get a diagnosis for and unfortunately general practitioners often dismiss the symptoms as horrible as they may be.

http://www.crohnsforum.com/showthread.php?t=48811

 

[mcate238]

Noooooooooo haha I don't want any more diseases! Is Crohn's not enough?!?! I started methotrexate last night and my doc said it would help the joint pain too. He thinks I'm just inflamed everywhere right now. But the metho takes at least 3 weeks to work--there is no way I can deal with this pain for 3 more weeks. I'm so grateful to have this forum

 

[nogutsnoglory]

Hopefully it's just an extra manifestation of your Crohn's and not a new disease. Last time I saw my rheumatologist he suggested secondary fibro and said the biologics should help my pains. They did for a while but now I'm in so much pain again so I'm going back.

 

[mcate238]

I started methotrexate Tuesday night and the pain was gone all day Wednesday and today. I know there's no way it started working that quickly--but I'm grateful for whatever the change was. I hope you find some relief.

 

[nogutsnoglory]

Maybe it's placebo just from starting something new. Whatever the reason it's good news.

 

[723crossroads]

Hi,

I am having a hard time and wanted to see if anyone else had been through anything similar.

I've been on Humira for 5 years, also on Paxil (20 mg) and Entocort. For the last ~2 weeks, I have been running a low grade fever. I have had Crohn's 13 years and have never run a fever from it before, so I assumed it was staph which I constantly suffer from, but doc told me today it is the Crohn's. I have also been having weird pains throughout my body that I've never had before either. The pain transfers from in my legs, to my butt, to my back, randomly. It's not always there but it is pretty annoying. It's not concentrated in my joints like what usually happens with Crohn's. I feel like it's in my nerves or something. Does anyone else have symptoms like this? I just find it bizarre to have such a change when none of my meds have changed or anything.

Thanks!

I have crohn's and fibromyalgia and you do get weird deep aching pain for no reason and it can put you down for days when it flares bad. I recommend seeing a rheumatologist as they can diagnose what it is for sure. There are meds that can help. I hope you get some relief soon and sorry you are hurting so badly! I am on oxycodone as I cannot take Lyrica because of severe side affects in my case. But alot of people have great success with it or effexor or cymbalta. Keep us posted, ok?

 

[723crossroads]

We are going through the exact same thing right now as I'm having sharp pains, zaps and weird sensations throughout the body that I don't understand. I have seen a neurologist and will be going through a series of tests. I am also seeing a rheumatologist. I would recommend those two specialists to help you get a better handle. One possible problem to consider is fibromyalgia. You are welcome to check out and participate in our IBD and fibromyalgia support group. It's a very hard illness to get a diagnosis for and unfortunately general practitioners often dismiss the symptoms as horrible as they may be.

http://www.crohnsforum.com/showthread.php?t=48811

Sounds like you too have it Noguts noglory! I get the zaps and stinging on legs and arms sometimes too. Mostly legs and feet! Isn't it horrible?

 

[nogutsnoglory]

I am seeing the rheumatologist again next week but last time he said I have secondary fibromyalgia. He said I didn't have fibromyalgia because I didn't have pain in all the 19 pressure points. I honestly feel I have either fibro or something similar but its been frustrating getting a diagnosis.

 

[mcate238]

I'm so sorry noguts. I actually have only had very slight joint pain since Wednesday--maybe it is the placebo effect--not sure what else could have decreased the pain. I am still majorly struggling. Can't believe I made it to work this morning after spending the entire weekend on the couch. Thinking about you!!

 

[723crossroads]

I am seeing the rheumatologist again next week but last time he said I have secondary fibromyalgia. He said I didn't have fibromyalgia because I didn't have pain in all the 19 pressure points. I honestly feel I have either fibro or something similar but its been frustrating getting a diagnosis.

My rheumy said you have to have 11 of the 18 points to have a diagnosis. I believe too the zapping is definately related to it because I never had it before in my life. I take B12 injections and gels everyday. Mine was fine when they did my bloods too.

 

[Carrie630]

mcate, has a doctor ever spoken to you about sinus surgery? I had a friend with staph in her nose that was intractable. I can't remember if they found out in an exploratory surgery or some type of imaging, but they found a huge staph infection super deep in her sinuses. They had to go in and do debridement and antibiotics multiple times to get rid of it. I guess it sucked like mad, but it's a thought if your staph never goes away. maybe it's way in the back and never completely dies.

 

[mcate238]

Carrie630--No! No doctor has ever mentioned that! I already see an allergist for my bad allergies, so maybe I should talk to him. My GI is currently referring me to a dermo to see if they have a better way to fight it. I never thought it could potentially be back in my sinuses and just showing up in my nostrils. I am definitely going to look into--thanks so much for reaching out.

 

[Carrie630]

Sure thing! You'll probably need to see an ENT doctor, but it's still worth asking the allergist about.