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To All,

UC and total colectomy in '87.

For the last 6 years I have been experience severe neck pain on my right side. Right side pain in my jaw and ear. The whole right side on my torso is tender. Right arm feel swollen and numb. Chronic headache spiking to migraines.

Have been to neurologist, ENT, spine dr, GI locally(Chicago) Just spent a week at Mayo and was diagnosed with pouchitis. Started flagyl and xifaxan today.

Has anyone experienced anything like this?

Thank you for any insight.

Replies sorted oldest to newest

Yes and no.

It all hurts on my right side...cervical, thoraxic spine, sacroiliac joint, hip, knee and achilles tendon...I seem to have muscle contractures too (mostly neck and shoulder but they be the purse and bags that I carry).

No headaches.

So far they are talking about various forms of AS, arthritis and disc degeneration but no one is talking about cures or treatments...I see the specailist in 2 weeks to find out if they are heading towards biologics or just more pain meds.

Good luck

Sharon

 

skn69

I have severe cervical spine stenosis and also enteropathic arthritis with sacroiliitis and multiple peripheral joint involvement. I now also have chronic pouchitis. The arthritis was diagnosed about a decade before the chronic pouchitis, although I had chronic cuffitis fairly early after my j-pouch surgery.

Jan

Jan Dollar

I have pain that seems to always concentrate on my right side. Lower back pain that radiates down my leg which I figure is sciatica. (haven't seen a doctor for it)  The latest is jaw and ear pain (right side again) which I went to my dentist for because I thought it was my wisdom teeth. He said I have TMJ and it's not my teeth. My legs and knees in general have been hurting recently. Not sure what's going on. I exercise daily and try to stay in shape. 

mgmt10

Thank you for the replies. Sounds like I need to add rheumatologist to my dr list. 

Forearms, hands, and feet are also very tight and painful. This is a strange one but I use a foam roller on my back, right side and neck 5-6 x's a day. Each time my back and neck sounds like your walking on thin ice it cracks and pops so much.

Has anyone found any relief of right side pain. Anti-inflammatory, narcotic, medical marijuana...anything?

C

I was on 2grm Naproxen/day for years (escalated from Ibprophen) until my gut finally gave out on it and I had to change to Daphalgon (I think that it is just tylenol) and Tramadol. The codine/tylenol mix seems to slow my gut too much and since I tend to get blocages it is unadvisable. They gave me some sort of muscle relaxant too but it doesn't do much.

For now I am waiting for the 'next step' whatever that will be.

Self treating can only take you so far then you really need to see a rhumatologist or another specialist.

By the way, I see an ethiopath (sort of a mix between a chiro and an osteopath) regularly and am now going back to the chiro as well (financial reasons)...I do a stretch/ yoga / pilates mix every morning and most nights to keep things limber and crack it all back into place when possible and use a heating pad on my spine as well.

Anything for a bit of relief

Sharon

skn69

I also have more problems on my right side.  I have a good chiropractor that does wonders. She starts with stretching and ends with the adjustments. It really helps my back and hips. 

I see a Mayo neurologist, my GI there referred me to him. He changed an antidepressant I was taking to amytriptyline.  It has reduced my migraines. I still take another prescription when a migraine starts and only get 6 of that prescription per month. I never need them all. He also said migraines are inherited. My mother had them but mine just started around 15 years ago. 

I also got to stop taking the prescription my local neurologist had me on, that wasn't helping. So I stopped taking 2 prescriptions for one to do the job in both areas of my health. I'm also in a study of 3,000. They test our DNA and are seeing if they can tell by checking DNA what drug would be more effective to use for patients' migraines.

I also have fibromyalgia and hurt all over. I don't know what causes all of my pain but have found out that OTC magnesium with vitamin C helps my my muscle pain. I found this out by taking "fibro malic" that also includes malic acid.  Malic acid is in apples. There are several companies that make it and I use the one by Trask. I buy them from various vendors on-line, depending on who has the better price. But you might want to consider trying the magnesium and vitamin C combination. I've purchased it at Walgreens so suppose it is everywhere else too.  I ran out a few weeks ago and was reminded of just how well they were helping me. 

The rheumatologist said I didn't have the kind of arthritis like Jan above has. She said it was normal for someone my age. It still bothers me but not enough for me to take any ,Kremlin medication. 

You might want to see if you have fibromyalgia and/or chronic fatigue syndromes.  Plus you might want another neurologist's opinion. I have peripheral neuropathy so bad in my feet that I need to use a cane all the time. My neurologist treats my feet as well. Besides being numb they felt like pins and needles all the time. The Gabapentin I take gets rid of the pins and needles but not the numbness and pain. Gabapentin is also prescribed to some for some with fibromyalgia. I have no idea of it is helping me with it.

Every medical professional I interact with asks if I am diabetic and I'm not. It's because my feet act like the feet of a diabetic.

It really is strange that all of us here have ,ore problems on the right side of our bodies. Who knew?

TE Marie

Has anyone tried swimming? Just being in water can be very helpful......

TEMarie, what type of med is amyltryptyline? We've discussed this prior, I get headaches, too. They've increased with my jpouch and persist with its removal and perm ostomy. Since getting my iron up with supplements, they've decreased but still 10 a month (in clusters of days, then a week and a half with none.) I'm seeing a neuro in NYC and thinking about a prevention med. I don't do well at all with antidepressants so thinking about another class of drugs. Maybe Botox again.....

Lambiepie

I've had severe knee pain before and I think it was due to dehydration or effects from cipro/flagyl during pouchitis.

 

Interesting my gastro, who was trained in Germany, said there are studies that show many pouchitis/UC people don't have as much inflammation when they use a anti-depressant or benzo for mood, etc.  He said studies show that even low levels of these meds have shown a correlation with decreased inflammation in the pouch/colon.

He is the FIRST gastro that has EVER told me this and it makes sense to me....

I'm absolutely convinced that 80% of Gastros trained in the USA are worthless idiots who don't have much compassion and truly have a lack of knowledge in the field. They simply follow a script for symptoms and have no insight or advanced knowledge in their field. 

I haven't been impressed with 80% of the Gastros I've seen over the years while living in multiple states.

temoty

Hy everyone,I have same problems for 5 month. My takedown was on 28th September last year and I was doing well. Start takeing probiotics and multivitamines and minerals from first day. Than at the end of the year arthritis get me. Since than I am in hell. It walks around - right side knee,hip,shoulder and now neck,jaw and ear. Some days I can barrely wake up and stand. I am on the edge. Is there end???

Branchy

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