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Old 12-18-2012, 09:21 AM   #1
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Question What helps the pain??

Hi,

I cannot get rhematologists to agree (Sjogren's vs UCTD) and I have accepted the fact that I don't have a true diagnosis, but what do you all do for the chronic musculoskeletal pain? It may lighten up some, but it never goes away! By some encouragement from my doctors, I have been exercising regularly and I am up to running 3-4 miles 3 times/week, but every time I run the pain gets much more severe and lingers for at least a day or two following...then tapers off to the usual level and the cycle starts all over again.

I have had the recommendation of Plaquenil for UCTD, but I'm hesitant to try that since the other rheumy thought the issues were due to early Sjogren's. Has anybody had myofascial/trigger point release or other soft tissue therapy work? Or anything else? This pain is just miserable...ugh.

I would love to hear any advice. Thank you!

 
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Old 12-18-2012, 10:11 AM   #2
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Re: What helps the pain??

Plaquenil really helped with my pain and fatigue, especially in the early stages. I still take OTC anti inflammatories, ocassionally. And gabapentin ocassionally, but I don't like it very much due to the side effects. I'm just a patient but plaquenil is often used for initial treatment of both UCTD, and Sjogren's according to what I've read. Used first in sclero too, as well as lupus. Is there any reason the Dr who thinks you may have Sjogren's objects? I have secondary Sjogren's and it wasn't contra-indicated by my Dr, so I was wondering if there was a particular concern in your case. Doctor's know their patients best. Anti-inflammatories are my Dr's first line of defense and generally stronger stuff is reserved for when you get contractures or other similar intractable pain problems, but even then, the mildest effective pain killer is used because some of the side effects can exacerbate some of the symptoms of disease. Have you checked with your Dr's to see what they recommend specifically for you? Wishing you a Happy Holiday and all the best.

 
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Old 12-18-2012, 11:59 AM   #3
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Re: What helps the pain??

Are you by any chance on an 'AI' because of breast cancer? They can cause a lot of pain in the joints and bones. I have the same complaint but do not want to take 'Aleve' or it's generic form because it can raise liver enzymes. It's no fun that's for sure.

 
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Old 12-22-2012, 06:23 PM   #4
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Re: What helps the pain??

So far I have tried 4 different muscle relaxers and am on my second anti-inflammatory, but I haven't felt a noticeable difference from any of them so far. The most recent rheumy that I saw (who believes early Sjogren's) wanted to try the AIs first. I don't think she's opposed to plaquenil as an end result, but I guess she wanted to see if I got any relief from the standard AIs/relaxers.

She is several hours away so for convenience, I will continue my care with a rhuemy closer to home and she'll forward her notes to the specialist here. I just haven't had a follow up appt here yet due to financial reasons. And I kind of felt like I needed a break from the wild goose chase.

I didn't know that plaquenil is recommended for both UCTD and Sjogren's so that is good to know. Thanks for the info.

 
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Old 01-09-2013, 01:58 PM   #5
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Re: What helps the pain??

Great job staying active! Anything you can do to keep moving will help. Couple of quick thoughts.

I'm a former runner (my doc has threatened to run me over if she sees me running again) and know how tough this is to think about, but have you tried other aerobic activities in place of the running? Or, at least using it to supplement the running with cross training? That might help out some.

I've worked with a great physical therapist who has done a lot for me. I've learned a lot about what to do, how to do it, and what to avoid. You mentioned the myo-fascial release. A good therapist can teach you how to use the foam rollers to help release muscles. There are times where those are just great for me.

All the best,
Scott

 
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Old 04-09-2013, 09:57 AM   #6
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Re: What helps the pain??

Hi Scott,

Wow, I am late in responding (did I mention that I am forgetful too ). Anyway...every once in awhile I do some circuit training at home and I recently joined a gym to add in strength training (boy does that hurt), but I don't really find that one form of exercise is easier on the pain vs another. Even walking for an extended amount of time will result in increased pain for a day or two.

I have thought about getting a foam roller to see if that will help. I try to do some self massage with a tennis ball which gives me some temporary relief, but it's nothing long term. It's kind of like a hot shower...feels better while I'm in there, but as soon as my body cools back up it goes back to its same old self.

Thanks for responding!

 
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