Roaming tendonitis anyone?

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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 8/11/2008 6:52 PM (GMT -7)   
Hi--
The ortho doc told me I have tendonitis in my shoulder and it is excruciating sometimes.  It will be bad for a week or so, then go away completely, occassionally it shows up in my knees or hips. It seems to go after the big joints. They tested me for HLA for ankylosing spondylitis and I don't have that. The emg showed tendonitis. They said it wasn't from a strain, I didn't do anything to cause it, I just wake up with it, though this time it started later, after dinner, sitting in a chair watching tv. Nothing provokes it and it hurts like crazy. The ortho said it was just something that was going to happen on and off.  But I don't know why.  Is it part of autoimmunity, sjogrens? They seem to blame everything on sjogrens. Maybe the connective tissue part of sjogrens? Also, do you know any way to take the pressure off my shoulder, to ease the tendons and joint? Maybe some kind of movement, position, or sling?
 
On a funny side note, now I flare if I go too long without taking my isoniazid (antibiotic). I have to take it and can tell when I don't take it on time. I think this tendonitis started because of that, I waited too long. I don't know why that would matter, but it does with other stuff. It seems to have a backlash effect when it wears off right now. Hopefully that will go away.
 
Thanks in advance for any help you can give.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/11/2008 7:26 PM (GMT -7)   
Hey Marji,

I'm not positive what my pain was from . . . it was either synovitis or tendonitis. It traveled from my forearms to other areas and I have back spasms and chronic tightness back there which may be related to the arm and leg stuff. It gave me real trouble in my arms for a couple years . . pretty severe . . . they checked for myositis but that was negative and usually affects the larger muscles. I did several different types and rounds of physical therapy at different times for neck, arms, wrists, back and hips. I even tried the epidural injections . . . I do think that one issue is not related to all the others and that is a pinched nerve(s) in my back.

I'm happy to report that all but the damaged nerve are under control.

I hope you get things figured out. Ice was my best friend for a very long time. I hated it at first, but it became a hands down help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 8/11/2008 7:26 PM (GMT -7)   
Hi Marji,
I don't have much help to offer except to sympathize. I seem to have a similar problem in my hip and occasionally my neck. Like you, the acute part of the flare lasts a week or so, and then seems to dissipate pretty fast. My pcp rx'd steroid after a neck flare that affected my shoulders arms, and hands. I went to my massage therapist the next day to see if she could spare me a round of pred, and sure enough after seeing her. it started to turn around. But then it happened in the hip - again I was told to take Pred by the physical medicine doctor, who I'd seen for a disc problem. I could barely walk when I saw her and was in quite a bit of pain and distress. But I held off and in a couple of days (with help from massage therapy) - it was nearly gone. Massage therapist noted there was slight swelling in the painful area, and I noted (confirmed by family) that there was heat around the area as well. After about a week - when I awoke wondering how I was going to stand it for another day, and was pressing on what I assumed were trigger points in my thigh - the pain just stopped. It was over.
So - my theory is - it does have something to do with autoimmune problems - like a bursitis or a similar inflammation. The massage therapy (neuromuscular) seems to help me when it happens - so maybe there are some trigger point/myofascial issues as well - but it does act like a flare. And if I had gone ahead and taken the Pred as instructed - I would think that is what solved the problem.
I'm glad you mentioned this - I've wondered the same thing - if it's all just about the autoimmune flare. I have a wonderful massage therapist who over the years has learned how my body works - how much is too much, and always errs on the side of caution, and she has helped me overcome things like this without using more than Advil. I know my day is probably coming.......but for now, the therapy and moist heat have been worth their weight in gold!
So I do have some advice.....find a really good neuromuscular massage therapist and see if they can work a little magic!
Hope you feel better soon - Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/11/2008 7:44 PM (GMT -7)   
Thanks lucy and Rosie-
The ortho swears it's not from my neck, where I had two surgeries and have more than 50% spinal compression. I beg to differ about the shoulder only because it is on the side that I have problems with and have loss of range of motion and other issues with my neck and thoracic spine. But they swear. My whole neck is caving in. I'm going to see physical therapy in a few weeks, but it will probably be gone by then! Just my luck. Anyway, massage does help a lot. I had training in ****su in college believe it or not, I took the course as an easy A and for fun. Unfortunately, I can't do it to myself due to loss of range of motion. I know what needs to be done, I just can't do it. Hopefully massage will be part of the therapy. I do think it is a combination of things. My neck and spine is caused by my autoimmunity and illness together, and so directly and indirectly they effect it. It almost feels like an infection in the muscle or something, the way it comes and reoccurs. Going out in the sun makes it start up or get worse too. Rosie, on the ice, I can't bring myself to put it on. I am so cold normally, I'm afraid it will throw me into one of those cold spells I get where I end up under five comforters hugging a heating pad for warmth. My body just doesn't seem to heat up like it used to, or cool down for that matter. I need a new thermostat!

Thanks you guys. I may try a little home traction, maybe reaching up a litle over my head (I'm not supposed to do that much, I have trouble because of my neck surgery) and let the arm hang and try to stretch the joint a little. Its not a move I do much and it may be stiff. The ortho told me not to use the arm at all when this happens. I don't know what the physical therapist will say. It hurts all the way down to my finger tips sometimes. Sure feels like nerves, but they did a very thorough and horribly painful nerve test on it and tested every muscle group and all. It was awful. And they say no pinched nerve. It must hurt bad though because I'm on hydrocodone and it is still really painful and used the voltaren gel on it and it still really hurts.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 8/12/2008 9:30 AM (GMT -7)   

I've been around a couple of months since I developed tendonitis in my foot, looking for answers. I have FM for 7 yrs now and also currently some inflam arth, still yet undiag......

My tend started in one achilles tendon.......in April...then a couple of weeks began in the other achilles, so now both feet are flared. Also some I think in my hand. I've been trying to read on that.

My appt is the 28th of this month. Hoping to find some answers other than steroids. I refused the last  rx of them.

kaymac


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/12/2008 11:55 AM (GMT -7)   
Hi Marji,
 
Oh this just sucks.  I can completely relate to your pain.  I was tested for AS as well, and the test came back negative.  BUT, that doesn't mean you don't have it.  It's another one of those stupid non-descript tests that just mess with everyone's heads. 
 
My tendonitis moves around too.  It attacked my shoulders earlier this year and now it's gone.  Now it's in my feet. My hips, lower back, neck are in bad shape too.  We sound a lot the same actually. 
 
I don't know what to chalk it up to.  I wonder if it's my sjogren's as well.  Or is it fibro?  Lupus?  AS?  RA?  BAH!!!!!!  Too many possibilities.
 
I'm doing physical therapy for my neck as well.  It seems to be the biggest problem. That and my lower back. I really hope you get some answers Marji.  I see my rheumy on the 20th regarding all this tendonitis crap among other things.  I'll keep you posted on what she tells me.
 
Take it easy friend!!
ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/12/2008 6:11 PM (GMT -7)   
Thanks kaymac and ginny,
Ginny, you had me LOL in your first paragraph. It's so true. I'm so sick of tests and everything, especially painful one. A psychopath couldn't have done a better job with my EMG it hurt so much and went on so long, two hours of needles all over deep in my shoulder, deep muscle tests. I had tears in my eyes OUCH. And the doc just acted like it was no big deal what he was doing to me. I wondered if he ever did it to himself. Oh, and he let the student/junior neurologist do it first, then he came in to really dig down to the bone. Sadist. But then I'm used to pain now and numb in the rest of the places. ;)

Kaymac, I hope you find answers. It's so weird. The docs don't seem surprised and have all these treatments to relieve symptoms but ask why you have it and what causes it and it's another story. They just see these patterns in our ailments and treat them, but if only they could figure out why. What puzzles me is how severe it is when you have it, and then how it moves. How bizarre.

Well, I hope we have some kind of breakthrough and this stuff goes away. Hopefully, they will discover something soon. The government is really backing good research. I think there may be a variety of reasons why we all have problems that lead us to the same place. I don't think one therapy will work, and just calling it autoimmunity isn't real helpful to us without finding out how we got this way and how to fix it. Maybe someday.

I'm so so sorry you guys have it too.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/12/2008 6:12 PM (GMT -7)   
I have RA and it a few symptoms that drive my rhuemy crazy-she keeps telling me if it weren't for the fact I don't have Lupus she would swear I had lupus. I am addicted to plaq-she takes her RA patients off of it after they start taking mtx or something else-I won't let her take me off of it. Every time I say I LOVE plaquenel-she says that's what I tell my lupus patients.
Then there is the fact that I have more random-extra joint symptoms fevers, fatigue, sun exhuastion(though not like you guys get) then I do joint symptoms (my arthritis so far as been non corrosive-not typical of RA).
Then the roaming tendonitis-Every time I go to my Rhuemy I have tendonitis in a new location it never lasts longer than a few days then just moves on to another spot). I thought it was just me with the tendonitis.
Sj

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/12/2008 6:39 PM (GMT -7)   
Mine is feeling better tonight and I think this shoulder may clear up early, in a day or two. Rain doesn't seem to affect it like it does my arthritis, today it rained and it actually felt much better, yesterday bright sun and I stepped out in it for two two minute intervals and it was very painful.

My rheumie gave me Voltaren gel for my hand stiffness and arms, but said I can use it on my shoulders or legs, where I need it. Voltaren is a muscle relaxer that used to come in pill, and the gel is helpful since it bypasses my liver and doesn't have the side effects of drowsiness and such. It relieves some of the pain and stuff from the tendonitis, maybe just tight muscles. You might ask your doc about it. Medicare pays for it though it is a relative new product. I asked the nurse about using it on my lower back and neck, she said you aren't supposed to put it there, but putting it on the shoulders and hips would get it in my bloodstream and it does help. It soaks in pretty well.

Marji
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


spiderlight
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/12/2013 9:19 AM (GMT -7)   
Oh my goodness - I am so relieved to have found this thread andhave registerd to reply. I've been having periods of excruciating tendon pain, sometimes with massive swelling, for the past few months. It's been almost constant for the past month or so, but 'roaming' is a perfect term for it. last week it was all across the top of one foot and the sole of the other and I was crawling around the house on my knees because I couldn't even touch my foot to the floorm, let alone put weight on it. Then overnight my feet were fine and my right elbow was agony all weekend. This morning I woke up with my elbow totally fine and the tendons all along the sole of my right foot excruciating again. There seems to be no rhyme or reason to it and it's really getting me down, especially because my partner has just broken his ankle and is needing a lot of help around the house, my 6-year-old is off school for the holidays and I literally don't know from one day to the next whether or not I will be able to walk. In the past couple fo months I've also had pain in my right knee and the tendons of my neck. It all started totally out of the blue - I just woke up in agony in the middle of the night with my knee massively swollen and bright red and I've not been right since confused

My doctor has done dozens of blood tests - negative for lupus, negative for gout, negative for rheumatoid factor. ESR has been up a bit every time. I have had ulcerative colitis for several years but it's been in remission for two years apart from a short flare in January/February this year. My doctor says this pain is 'a colitis thing' but is referring me to a rheumatoligist, and I have an appointment with my colitis nurse specialist on the 27th about it as well, although I think I'm going to have to phone her tomorrow. I've had classic joint pain with colitis flares in the past and a steroid shot has always obliterated it overnight, but this weird wandering tendonitis is new. I'll be watching this thread with interest in case anyone gets any answers.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/12/2013 9:22 AM (GMT -7)   
Spiderlight,

Welcome to the Forum. You probably want to post a new topic to get timely responses to this...this discussion seems to have petered out in 2008, so I doubt the original posters know anything new...
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

spiderlight
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/12/2013 11:08 AM (GMT -7)   
Oops, sorry - the top post is claiming to have been posted today on my browser, for some reason, so I didn't realise it was an ancient thread! Thank you.
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