Update on how I'm doing -- four months of tapering down on meds that have helped.

Hey all -- I know I'm not regular enough to know you guys well. I've been struggling and just trying to take care of responsibilities.

-I have chronic mystery pain (my diagnosis -- after seeing 11 local physicians and going to Mayo in MN).
-I get lethargic, my mid-upper back and shoulders hurt, moving is harder, I just want to lay down. I get bad enough I just lay in bed with a heating blanket and pad, and wait for meds to kick in before I can move much. And, my joints will hurt a lot if used in strength type movements repeatedly (notice when trying to lift weights or shovel...)
-Started about 6 months after beginning a treatment for Ulcerative Colitis called Remicade, an anti-tnf biologic infusion medicine.
-Do not know if that med brought this pain on, or something else. Did work in industry with exposure to chemicals, though I'd never had issues before (for 8+ years).

-Tapered off of tramadol (was taking 6 50mg tablets daily). Did this starting late August (Mayo advised me to do this, btw... thought it was potentially causing the pains). Was off of tramadol by early October, and have gone without since.
-Was also taking an opiod drug (very low amount) -- called lomotil -- for IBS issues. Similar to immodium. Have been coming off of that as well, and has been VERY hard pain-wise. If I taperd too fast it would trigger Ulcerative Colitis symptoms (digestive issues) -- and I'd have to go back on. Am finally on 1/2 pill once daily.

The pain doctor said tramadol is not a good long-term option. Personally -- I'm multiples more productive on it. Was on it for years. (This all started summer 2012). I miss it.

Pain doctor said to try nortryptiline (sp?) next. I asked about trying LDN since it has show to help people that seem to have similar issues as my body creates. Unfortunately I started for three days when I tapered off lomotil fast, and was thrown into a pre-flare conditioni for UC. So I stopped it (can't be on any opiods/opiod-like drugs), and went back on a little lomotil/tramadol to help feel better -- and it worked to calm my digestive system.

Here's my biggest problem...
-I am in the process of starting to search for and buy a business. I had to sell my last one I owned with my dad last year due to health issues on my dad's part. Now I'm in a position of needing to get my life going again, and still seem to be going downhill functioning-wise.

I don't know what the solution is. I don't know why I hurt, or if anything will help that is okay to take long-term. I would prefer to fix the problem instead of medicate, but it's very difficult when nobody has a direction to head at all.

If anyone has any insights, or experiences similar to this -- I'm seeing if there are ways to head treatment-wise I haven't thought of. It's so hard when you don't know why I hurt.

Thoreau, The only thing I can tell you is that I have been using Tramadol for several years and my doctor has never said it was bad for me. I do not use it every day. I used to use "Ultracet" , which is Tramadol with acetaminophen, which one of my doctors said was bad for my liver and switched me to just Tramadol.

Perhaps others have more experience with the other medications you are on.

Hey, thank you to both of you. I guess I missed putting a subject in initially -- so I just did that.

Pitmom, I actually am taking tylenol... :-/ . Mayo really wanted me off of it. Locally, the doctors are more lenient as I've had to taper all the other meds and it's been hard. I'm taking around 3 g daily of it usually. I was on Tramadol about three years. I had to gradually increase doses to keep getting results, but man it was better than the hurt I've endured.

Skeye, thank you for your post. I appreciate your idea about perhaps -- after consulting with a doctor of course -- considering if LDN can be taken with what I'm on. Since it's only supposed to be active for 4-6 hours (can't remember) at night after you take it -- you would think taking another med the next morning might be okay. I'm really glad you're finding it so helpful!

Thanks, Stray.

1. I AM super sensitive to meds. Not all, but a lot. I did homeopathy once, where critics argue that the "remedies" you take consist of nothing. Well, one of them threw me into bad digestive symptoms (UC). The homepath said about one in thirty patients is very sensitive, and I am definitely one of them.

2. My GI doctor didn't know much about treating UC with LDN the last time I discussed it with him (1-2 years ago). Right now I'm gluten-free and holding okay... but don't want to jinx myself here!

Hey js, thought you disliked me after I stood up for gary on the other forum once back a while. Didn't hear from you after that.

Did you ever read that it turns out my dad likely has either Parkinsons or lewy body dimentia? Some people were upset I was posting about stuff other than UC on the forum in 2014, but I was doing all I could. Turns out there was legitimate reason to have the concerns I did. It's been a rough past few years.

I've never done physical therapy for the pains. I would do it in a sec if there was a valid reason. I know they incorporate it into the 3-4 week long pain programs at Mayo and the local university.

Back a bit over a year ago I saw a GP, that recommended going gluten-free and trying a certain kind of physical therapy. Unfortunately, she couldn't tell me why I needed to see the physical therapist, or what they would do. Turns out going gluten-free has helped my gut (at least it seems so, still in remission after 14+ months without any Remicade in my system). As far as the physical therapy goes, back then I needed more info on the pains before going that route. I didn't know why I hurt so bad (still don't exactly). After MRI, CT's, tons of bloodwork, and a trip to Mayo... I feel more confident treating the symptoms since nothing bad has come up in testing. Maybe I should call/email her and get that info.

My days... pain-wise? I'm still struggling, if that's what you're asking. I'm leaning towards utilizing tramadol for the short and medium-term until I get a new business bought and settled in. I do think I'm better than I was a year ago though. I see less moments of such pain that I feel like doing anything I can to make them stop. I still will hurt badly, but man how bad it got sometimes... was truly dreadful

How have you been?

I knew you'd point the obvious out... but can you explain why exactly I should see a PT? I don't have any broken bones, or torn/bruised/stretched etc... areas. As far as I can tell my issue is somehow neurological.

I mentioned PT with the pain doctor, but he didn't allude to any significant reason I should go.

Based on your original post and your follow up posts. I suggest you go see a neurosurgeon that specializes in neck and back issue. Not an orthopedist, but a neurosurgeon. Bring all your films and tests with you when you go. Describe your symptoms and what you have tried. They will take it from there.

The point is we are not Drs and we cannot say PT is what he needs. If his Drs not recommended therapy or ordered therapy then they must not feel it would be beneficial at this time. Pushing the PT suggestions is mute point if he doesn't have a order for it since last I checked that was still necessary.

Hey all, thanks for the messages recently on this thread.

I'll consider all your suggestions. I'm kind of leaning towards just taking pain meds (tramadol) this year while I get a new business bought and set up well, and then evaluate after that is settled into.

One main thing that I remember my pain doctor saying, is that he's seen people develop pains like this from other medicines. I took Remicade and developed similar pains. He wasn't sure about Remicade causing the pains, but said it's possible (as did Mayo). He said the good news is, that with time, the pains did go away for the others. So, if it was due to Remicade then the pains should eventually go away.

I know the pains are better now than a year ago. So maybe it's worth waiting things out and trying to assemble the rest of my life more...

I don't know if you've tried this, but I find going to the gym and substituting a gentle stretching program for my usual workout can be very helpful in getting rid of pain. I just use less resistance and fewer reps, performed slowly and held briefly at the point of greatest extension. You can easily do the same thing at home, too.

For me, being too inactive leads to major joint, muscle and connective tissue pain.