Old 09-28-2017, 10:34 AM #1 (permalink)
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Default Saw 2nd Rheumatologist...and even more confused & frustrated

BLARG!

Now that I got that out of my system, I want to first thank you guys for helping me prep for my new rheumatologist. I made notes and she took the time to really talk to me. Well, as well as a doctor can talk to their patients, I guess.

Anywho, I guess my real question is about tendonitis.

Is tendonitis a symptom of Fibro? And if so, what do I do about it?
And if it's not a symptom of Fibro, what do I do about it?

I am an athletic and active person (well, I used to be), but now it seems like every time I even look at exercise, I get tendonitis. For example, I slowly tried to work up to running. I jogged THREE times and got high hamstring tendonitis. So I'm back to walking. I have been focusing more on gentle yoga... and I got a tendonitis flare in my shoulder.

If you've ever had tendonitis, you know it can take weeks and weeks to heal. So I'm not sure what I'm supposed to do it I get tendonitis just thinking about exercise.

Should I go see an orthopedist? Go to physical therapy?

For clarity, I am currently using:
Cymbalta - depression/anxiety (does nothing for my pain)
Gabapentin - recently started, undecided, may not continue
CBD oil - releases my muscles
Cannabis - for sleepy time
Exercise: walking & yoga (mainly for strength training & stretching)

Thanks,

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Old 09-28-2017, 03:11 PM #2 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

umm Did the rheumy diagnose tendonitis? Or could this just be fibro pain as we are often exercise intolerant and things seize up and get stiff and very painful.

Some people hurt very severely from exercise and activity especially repetitive use of any muscle group...for me many activities mimic what feels like tendonitis rather than just aching.

SO i am wondering if maybe its the same for you and your body cant tolerate certain levels of activity anymore. I couldn't run from the time i got fibro or lift anything beyond the weight of a saucepan of veggies ..i could tolerate a short walk and then rest then potter around and do a bit more and use my arms in bursts to do light housework..like dusting...sometimes hoovering on good days but i couldn't do anything strenuous like swimming that take big arm movements.

My arms elbows hands wrists shoulders and knees all seize up in the joints and the muscles go hard and painful..im wondering if this is how you are responding and think its tendonitis.

Anyway try to go easy because either way the treatment is rest and gentler use for both fibro flaring or tendonitis as far as i know. Maybe anti inflammatory meds for tendonitis but they dont usually help fibro pain.
You could go to a physio for advice but make sure its one who fully understands fibro before you start with treatment..or a pain clinic might have ideas and occupational therapists and access to hydro therapy to ease yet exercise at the same time.

Good Luck

Last edited by diamond : 09-28-2017 at 03:16 PM
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Old 09-28-2017, 10:07 PM #3 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

I work in physical therapy. I suggest rest, ice, elevation, stretching, massage, yoga. No running- let it heal. When you're ready to run, google a return to run program. Where is your tendinitis?
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Old 09-29-2017, 12:11 PM #4 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

Hey Diamond,

You busted me! No, I haven't had the tendonitis officially diagnosed. I mean, I have in the past (shoulder) but all the new stuff cropping up has not been seen by a doctor. The hazards of being my own armchair doctor, right?

It's just so hard for me to wrap my brain around. Like, okay, I have Fibro and therefore my pain signals are messed up. I understand that on a cognitive level, but on a day to day it's hard for me to understand. Also, every time I went to see a doctor in the past because my neck hurt or my shoulder hurt or my knees hurt, they'd say "oh, it's runner's knees from running and you have a tight IT band. Here's some exercises to do."

I just keep thinging, if it's not tendonitis, what is it? It's like, I cannot understand how fibro can make something hurt if there's no injury there. Does that make sense? ARGHHHH!

So then my next question is, how do you make it stop hurting? I'm on all these meds but literally NOTHING has changed.

Like Rslom suggested, I do yoga. I stretch. I try and nurture the healing of these "injuries" but the pain from these "injuries" do not subside. For example, I've had a spasm in my back in at least 2015 and sometimes it makes it difficult to breathe. I vacillate between resolve and resignation.

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Old 09-29-2017, 12:42 PM #5 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

I've had severe shoulder pain since the age of 20, and for years all doctors told me it was due to repetitive movement and would simply diagnose me with RSI (Repetitive strain injury - a popular diagnoses at the time, I don't even know whether the same diagnosis exists!) but I always had the feeling that doctors were dismissing my pain, the extent of it, the suffering, the inability (to type, do house chores, even sleep!)

Then years later, after a failed neck surgery, I told my new surgeon right before my 2nd operation about the extreme pain in shoulders that I've had for almost 2 decades. He said 'let's take an MRI of the worst shoulder (my right side)', then we know what we are dealing with. And yes, the MRI showed it was tendinitis. And bursitis. I was shocked and relieved at the same time. I knew it was something, like something tangible, if that makes sense.

So after that diagnosis, I had physical therapy and cortison shots done in my shoulder. Nothing helped. I had the 2nd neck surgery, it failed again, then fibro was to blame. It was to be blamed for everything. I'd mention my bursitis/tendinitis, the doctors would say 'it is your fibro'.
IBS? fibro
headaches? fibro
unrefreshing sleep? fibro
feet pain? fibro
jaw pain? fibro

When I pursued these aches further, it turned out I also had an ulcer in my stomach, so most of the pain was down to that. Then I had an xray done on my feet and yes, heel spur and plantar fasciitis. So yes, I am also confused. Is fibro making my body fall apart slowly? Or do I have fibro because my body is falling apart?

No matter what the cause/effect is, my advice is to listen real well to your body. With tendinitis, the best treatment I find is rest. And basic relaxation techniques. I also like to massage the area with a tennis ball (this can cause severe pain at times, depending on your mood, take it or leave it) And sadly acceptance. I often get so frustrated that I have these friends telling me some OTC medication or patch did wonders for their shoulder pain, and I try it, and it does NOTHING. It gets me down, and makes the pain worse. So accepting that rest is the only medication gets you there half way through. (and by rest, I don't mean, not doing anything all the time. But take breaks when walking, walk short distances, do only 15 min of yoga, sometimes just 5 min.)

Lots of positive vibes!
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Old 09-29-2017, 01:42 PM #6 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

its is confusing still for me too as my fibro has progressed i wonder if i have actual injuries...tendonitis etc but like vicky says it all a mystery and rest ice or heat and pacing activity is the best solution and for some medication helps...but then in my view you have to be careful the meds dont block the pain and then you overdo your muscles tendons and ligaments and make them worse for longer.

maybe ask for a diagnosis and MRI Chinacat....it might help you come to terms and discover what is what....the problem is fibro for me seems to settle anyway in' injured' areas..i to have been told frozen shoulder, plantar facitiis and chondrium patella ( shoulder knee feet problems) but no medication has helped like most people with these kinds of problems.

Wrongly or rightly i once gave one of my pain killers to my hubby to try for a bad thigh pain....happily for him 1 pill took his pain away!

I can take 8 a day and still be in severe pain all over..the mystery of this disease!
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Old 09-29-2017, 02:13 PM #7 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

vicky may i ask how does tendonitis show up on an mri .... and RSI....does that show with any test or scan?

My fibro has progresses so much i wonder for myself.
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Old 09-29-2017, 03:15 PM #8 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

It is always good to question and not blame everything on fibro. That being said, this is a wierd, wierd disease. I had wicked hip and glute pain for weeks this fall - 4 or 5 muscle knots in my gluts. Could only fall asleep if I did this 45 minute routine of stretching, TENS, heat, muscle rub. Nothing got rid of it. Then I got a really bad chest cold and - bam - hip and glute pain gone like magic. My brain had something else to focus on. Now that my cold is improving, I can feel things creeping back in my feet and legs and hips. Felt like crap from the cold, but it was kind of an awesome pain free couple of weeks. I guess, try to manage the pain, and if it persists, look into further answers to see if it's something unrelated to fibro. For me, as meds simply don't work, I use TENS, heat, and muscle rubs (sombra, biofreeze, salonpas and tigerbalm being favourites - in that order). Physio therapy was great for me, but only because I lucked out on the world's most patient therapist - he worked on my neck and would spend 15 minutes every visited massage and stretching my neck and shoulders. Without that, the stretching wouldn't have helped. If you stretch, be very careful, do it very gently and for short periods of time. I also find that trigger point massage has helped over the years. It's a kind of self massage. You can googel it.
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Old 09-30-2017, 12:59 PM #9 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

Quote:
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vicky may i ask how does tendonitis show up on an mri .... and RSI....does that show with any test or scan?

My fibro has progresses so much i wonder for myself.
I don't the technical side of things, but I had an MRI done of my right shoulder and shoulder blade, and the radiologist report clearly said I had tendinitis and bursitis along my supraspinatus muscle.

RSI - that diagnoses was made based on my complaints. None of the doctors referred me to MRI's or Xrays (but this was in a state insurance country, so doctors were reluctant about sending anyone for testing right away. The tenditinis was discovered when I had very expensive private insurance) Diagnosis was based on complaints: shoulder, neck pain, tingling in my fingers. And when they heard that I was working part-time and studying part-time (writing my thesis), the typing was to be blamed. Which of course made sense, I was, indeed, typing all day - typing is one of the most repetitive movements out there, and done wrongly (wrong desk/chair/height/stress about deadlines etc), it can lead to severe pain. And thus to tendinitis/bursitis.

How were you diagnosed with tendinitis/bursitis? I did not even know those were before the MRI scans. Never heard any doctor mention it before.
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Old 09-30-2017, 01:04 PM #10 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

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in my view you have to be careful the meds dont block the pain and then you overdo your muscles tendons and ligaments and make them worse for longer.
Yes, this is so so so true, thanks for reminding me. This is why my shoulder got worse as well. I'd take painkillers, max. out on all kinds and keep going. Then once they wear off, you are left with intense pain - and again you take another pill to mask that extreme pain. Vicious circle...

So once again, I cannot emphasize enough, from my own experience, how important it is to rest and to pace oneself.

I say this as if it is easy, but it is not. sadly. It is something I have trouble with every day. Saying no is one thing, feeling 'lazy/guilty' is another thing and with me, I hate to stand still, I have this feeling I have to keep busy all the time, don't know why....It just sucks....
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Old 09-30-2017, 01:13 PM #11 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

Sorry for posting again, but another thing I wanted to share.

When I told one of the doctors (the 3rd doctor who diagnosed me with fibro) whether my tenditinis/bursitis was also caused by fibro, she dismissed me as 'yes, it is fibro', like she was telling me 'yeah yeah, deal with it, stop complaining, just go away'. And yes, I did go away, leave her office, but I regret that everyday. I should've shown her the MRI scans, told her about my prior diagnosis of RSI, my stressful work/university life, my severe bike accident etc. In my opinion, fibro makes things worse, and in my case, I believe, fibro did not cause the tendinitis/bursitis. I hate that doctor for dismissing me like that and hate myself for not standing up for myself.

(she was my 3rd doctor, not because I needed another diagnosis/3rd opinion, or that I particularly enjoyed going to doctors, I hate doctors, but I needed her to sign the paperwork for sick leave from my nightmare job. In this country, each doctor can only write a sick note for 20 days, and I was so sick of my job, mentally unstable being bullied/made invisible every single day, that I had to 'shop' for that stupid sick note. Go from doctor to doctor. And there is no privacy, so I could not have my shrink write that note with my other official diagnosis of PTSD because then everyone at work would read that report and gossip about me being insane.....lovely, just lovely....)
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Old 10-01-2017, 01:26 AM #12 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

Oh man Vicky that is too much stress , I get it . Although I lost all that in life along with my sanity , deep down somewhere inside I felt deeply guilty knowing someone like you still going at it every single day. If I haven't lost it all I would still be going at it too and probably break my self in pieces along the way as I did before literally in pieces. I hope and pray that you especially find a break somewhere soon. It is too much.

On the topic . Chinacat I can honestly say at this point I don't know, cause fibro is just a collection of so many symptoms I lost count now of how many. All I know if it doesnt show on any kind of medical tests it has no other choice but to be fibro. Cause that's how most doctor categorize it , slapdash I know it just how it is to them I guess. However , now you've got me wonder for my self about my symptom of SPD , cause if it's not fibro it can be even more nerve wracking to fix. But as long as I'm not a sensory seeker like trying to touching strangers , having suddenly desire to stand on my head, or desire to do something creepy that I'm not suppose to. I have no choice and no other evidence to show but blame it all to fibro also. Should I let it be? I'm not sure anymore . I guess all I can do is ask and wait for the worse .

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Old 10-02-2017, 02:26 PM #13 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

Hey all,

Once again, you are all on point. Thank you so much. Sometimes just a little perspective helps.

I like the of the chicken/egg concept because I often wonder that too. "Is fibro making my body fall apart slowly? Or do I have fibro because my body is falling apart?" I know I didn't feel this bad last year... or did I? Actually, I think I did but I just never said/did anything about it. But I definitely feel worse at 40 than I did at 30 or 20... so that's also aging.

I had a pretty bad weekend. Without getting into the dirty details of what all hurts, I was feeling pretty down. When you have a flare it's basically all you can see. So when I look to the future all I can see is pain. But then you get through the day and wake up and maybe it's not as bad that day, and you get some hope back.

I went back to my Rheumatologist again today because of the flare I had over the last few days. I sobbed and sobbed and sobbed. Sadly, there's just not a lot she can do that I'm not already doing/trying. We just need to give it more time to find out what works and what doesn't. That feels hella bleak when you want relief NOW, but that's the way it goes, I guess.

I did end up getting a lidocaine/cortisone shot in my back spasm and my butt (for the high hamstring pain). The muscles around the back spasm spasmed in response and my butt hurts from the shot. LOL.

Oh well. It could be raining, right?

Thanks everyone again for all of your insight and thoughts. It really does help make this easier to navigate.

Best,

Chinacat
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Old 10-02-2017, 06:52 PM #14 (permalink)
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Default Re: Saw 2nd Rheumatologist...and even more confused & frustrated

On that note , although rheumatologist are the expert when it comes to treating chronic pains. There're a lots of argument that rheumatologist aren't suppose to be the one to treat FM cause FM logic are to much different than any rheumatological expert could comprehends. Although I totally argree with that, but who else could help us dealing with day to day basis?
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