Constant body aches

[Ozboz]

Do other people with crohn's have constant ache's and pains in they're bodies when I'm active during the day or just doing something I don't notice them as much, but when I 'm resting in the evening or in the morning there most prominent. My diet is not the greatest and I don't drink or smoke also have had bloods and doc said for me with crohn's and Ankylosing spondyiti's there good.

Also when I have ankylosing spondilitis pain it's different this pain is more like in the muscle and tendon's and even maybe a bit of nerve pain it's not bad pain but like constant mild pain in the body.

 

[ronroush7]

I have peripheral neuropathy in my left leg. My doctor has put me on Gabapentin.

 

[Sophabulous]

I find I'm usually worse first thing in the morning after being in the same position all night, or if I have to stand up in the same place without moving for long periods.

I have lower back and neck pain which then spreads into my hips and buttocks but MRI has ruled out sacroiliitis so we assume it's got to be muscular in my case.

It can also get worse if I do too much bending and walking so I can't really win anyway! I find deep tissue massages really help me when things are acting up.

Best of luck!

 

[my little penguin]

Tagging Maya142
Since you have AS
It can also affect the enthanetis (tendons etc..) that attach to the muscles and bone
They inflame with SpA which AS is part of
These tend to be worse first thing In the am and late at night

What meds are you taking for your AS ?

 

[Maya142]

Enthesitis is inflammation where tendons/ligaments insert into the bone. That can cause quite a lot of pain. Common sites are the achilles tendon, above the knee, around your elbows, on your pelvis etc.

For enthesitis, generally a biologic is used.

It could also be muscular pain - if your AS in not under control, then the inflammation can lead to muscle spasms and the muscles try to support an inflamed joint.

Nerve pain tends to be tingling, burning or shooting pain. It's very different from muscle and joint pain and needs to be treated differently.

What are you on for your AS?

 

[Ozboz]

Currently on nothing but pain killers for the AS I'm in hospital waiting for surgery for my crohns so they stopped the biologics cause i also had an intro abdominal abscess

 

[ronroush7]

Currently on nothing but pain killers for the AS I'm in hospital waiting for surgery for my crohns so they stopped the biologics cause i also had an intro abdominal abscess

Hope you are well soon.

 

[cmack]

I'm in your corner OZ. I get those pains after resting too.

 

[Ozboz]

Sometimes the AS is a lot worse than the crohns and being a guy in his mid 30's and wanting a child I often wonder how I'm going to go with a kid running around the playground. I have a very active dog and keeping up with her can be a problem but on the other hand she actually makes me go and exercise which is good with crohn's and AS.
If my dog wants a walk she starts poking me in the backside to take her out or will start taping the door with her paw.

 

[cmack]

Dogs are great friends to have. Hang in there bud.

 

[Maya142]

Once you are allowed back on a biologic, you will feel a lot better!! AS is definitely tough - both my daughters and my husband have it - but you can get it under control with the right medications.

For my younger daughter, the AS is way worse than the Crohn's.But we are getting it under control with a biologic and immunomodulator. My older daughter is also on a biologic + methotrexate and is doing great.

Hang in there!! Things will get better.

 

[Ozboz]

maya when your daughters and husband are on the bioogic can they do more physical activity before they get tired from the AS

 

[Maya142]

Yes, definitely. I think my younger daughter would be in a wheelchair without biologics. She has the most severe AS, and does get tired quickly, but she is building up her endurance by doing physical therapy twice a week and going swimming as often as she can.

My other daughter is doing GREAT on biologics, lived a pretty normal life in college and even played soccer recreationally.

My husband does get tired easily, but has a full-time job and has been very successful. He has very severe AS too - many hip replacements, partially fused spine, fully fused SI joints.

 

[Ozboz]

Thanks maya yeah mine spine has calcified(fused) at the bottom and top of it I can still bend over and do most things it also affects many other joints in my body and I think I have Enthesitis as well cause I get all of the tendon muscle spasms ache's yeah when I was on humira the AS was under control but not the bowel.
So now have to get an ileostomy and hopefully after that get back on a biologic ASAP I have been off it since the start of the year due to an infection that has now abscessed so in hospital on antibiotics and getting a gastroscopy on Wednesday so the surgeons can make a plan.

Also had a CT and a colonoscopy during this admission don't know why they didn't do the gastroscopy during the colonoscopy but it's Australia and it's free so I can't complain and the IBD team at my hospital are fantastic so I can't complain.

 

[cmack]

Best of luck my friend. Shoot me a pm any time.

 

[sabboo]

Not been as bad since I did a food intolerance test and cut those foods out if my diet. Also aspartame makes me knees hurt like mad the next day so cut that out too.

 

[tots]

low vit D can cause this problem.



Lauren

 

[cmack]

My GP says that besides stevia, which comes from an actual plant, all artificial/zero calorie sweeteners are poison. I thought I was doing myself a favor by not having the extra calories in my ginger ale, apparently not. As soon as I quit I noticed less pains in general. It was quite a significant difference.

 

[Ozboz]

low vit D can cause this problem.



Lauren

Vitamin D is fine always gets checked

 

[cmack]

How are things going in the hospital?

 

[Ozboz]

Yeah good still on TPN but they give me day leave for 8 hours so I get out for a bit bloods are looking better according to the doc's now just waiting for surgery looks like end of july.

 

[cmack]

Stay healthy Bro. I'm happy to hear the bloods are good.

 

[cmack]

How are you doing OZ?

 

[Ozboz]

Excellent and you

 

[cmack]

I'm good thanks.

 

[Ozboz]

@maya142 just wondering how long have your kids and husband been on biologics for they're AS and do they get regular test's for any of the side effects that can pop up.

 

[Maya142]

They have blood work done regularly. My girls are on biologics, my husband is not (he will start soon). They haven't had any side effects at all. Between my two girls, they have been on most of the available biologics for AS/Crohn's.