Setbacks

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Ok universe, I would very much appreciate a redo for today, please and thank you.  It is 9:30 on Saturday night and I am supposed to be dancing my booty off with some friends at a concert.  Instead, I am on the couch, more than a little loopy from muscle relaxers.  

Very long story short, I’ve had extreme shoulder pain for the past 48 hours.  Extreme to the point that I can’t lift my right arm, seriously considered wearing a sports bra to work under my suit because the other ones were so uncomfortable, and couldn’t really change clothes or do my hair without tears.  I tried stretching, meditating, ice, heat, and more stretching.  It continued to get worse.  It felt frighteningly familiar and last night when trying to sleep, I was so scared that I felt like I was going to hyperventilate.

You guys know what my fear was, don’t you?  Sudden extreme pain, loss of function, a sensation of “twisting.”  Please no symmetry, please no symmetry, please no symmetry.  I just don’t think I can handle this again.

I went to the Saturday am sick clinic at my doctor’s office this am (WONDERFUL concept) and after initially scaring the crap out of me, they have ruled out torn rotator cuff (which was surprisingly their main concern) and arthritis involvement in the shoulder  (the joint looks really good, no inflammation to speak of)and are thinking it’s tendonitis that has really aggravated all the muscles nearby.  I have a follow-up appointment this week and they are wanting to set me up with physical therapy.

Whew!  I’m ok with tendonitis.

I have no idea how this happened.  They keep asking me if I have fallen recently (surprisingly no) and have I been working out a lot lately (HAHAHAHAHAHA.)

I have a pretty high tolerance for pain now and this whole shoulder thing….it takes a lot for something to hurt so bad that I burst into tears and am willing to venture out of the house dressed like a hobo with really bad bed head.  In fact, this tendonitis kicks RA’s ass.  I never thought I’d say that.

Now that doesn’t mean, my dear sweet RA, that you have free license to stop playing nice. Because you don’t.

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16 responses »

  1. Finally, I hear about someone else with RA who’s got the weird tendonitis thing. I mean, I hope it goes away for you soon though! There is in older literature anyway, references to folks with RA who get a generalized tendonitis and bursitis, but those reports describe those patients more as “benign” RA – as if they seem not to get the deforming type of RA. Well, that’s just hogwash I think. I got the classical type RA, but I also have periods of “generalized” bursitis and tendonitis. Not that I have it all over during these times, but in different places at different times. And yes, it can really, really suck.

    I think because my rheumy can’t see visible swelling that she thinks it’s fibro or some such crap. But I know it’s not. Anyway, among other places, I’ve gotten in what I think is my biceps tendon, and it can aggravate the upper arm and shoulder and also tendons near my thumb and first finger if it gets bad enough (in fact this was actually my first really “big” symptom pre-diagnosis, although I’d had smaller ones within the two years prior). I’ve also gotten what I call tendonitis “around/just under my shoulder blades before too).

    Mostly rest and being really careful with what I do for a few days (sometimes a week or two), plus some icy hot and or heating pads and such is all I can seem to usually do, and just suffer with it. Shoulder slings didn’t really help because they pull too much on my neck, but holding it that way with the wrist up around your upper chest might help. Maybe you can have someone use a big ace bandange to wrap it up against your ribs like that.

    I know I read a fairly recent abstract somewhere that said, at least in a mouse model, that RA actually starts in the tendons near the joints and then “spreads” to the joint. I’ll have to see if I can locate it. I wanted to show it to my rheumy, because I’ve often told her that my “flares” always seem to start in my tendons (hands, shoulders, sometimes feet, all for sure, and hip might be one too). And I don’t get the swelling like I used to, but damn, you should see how mangled my wrists look after all these years of “tendonitis”! And how loose some of my fingers are. And the tendon tears in fingers I’m starting to get now. Or heck, my now deforming feet that never had any swelling in them at all! My meds might deal with swelling pretty good, but I am damn well convinced that I still have subclinical inflammation going on in bones and tendons and bursea. Getting rid of visible swelling is NOT curing or stopping the disease and rheumys need to be aware of this. I know they are expensive, but I wish MRI and ultrasounds were much more common place in following treatment progress in RA, instead of just being for research purposes only.

    Does anyone ever get “weaver’s butt” or “taylor’s bottom” where it hurts you to sit in hard chairs, like you have no fat in your but and are sitting on your bones directly? I also wonder if some bursitis could be contributing to my low back and hip/leg pain I’ve had bouts of over the years. Anyway, I would love to hear from other RA’ers who have had problems with “tendonitis” and bursitis and what your experiences have been like.

    • That’s an interesting point- I don’t know much about tendonitis preceding flares. All of my affected joints are small joints (pointer fingers, feet) so when I first started experiencing symptoms, I was unable to differentiate between sensations- the whole thing just hurt. It actually would make sense that it was tendonitis. With my feet, before the joint started hurting, I had two or three periods where it felt like my arch was swollen. It wasn’t visible but it really hurt, but would go away after a few days.

      Thank you for the tips- I slept on a heating pad last night and that and muscle relaxers have made today much more pleasant although still really sore and stiff.

      I would LOVE to see the articles if you can find them- I’m going to look some up too!

    • Chelsea, I always have “weaver’s butt” or “taylor’s bottom,” despite how fat my ass seems to get (and it’s doing a wonderful job spreading these days… wait, that didn’t come out right.). Anyway, I get pain along with distinct (after a while) numbness that would seem to be right where my bones are. Sigh.

      • I’m with both of you on this!! Wow, another thing to be glad that I’m not experiencing alone!! There are some days that I would love ❤ to be able to just rub my rear/tailbone when I'm at work…not like that would get me a lot of strange looks, huh?

        I've been having tendon problems in my feet for about a year now. Could have sworn at one point that I had a broken bone in my left foot because it was hurting so much, but x-rays just showed my normal inflammation and they told me it was probably plantar fasciitis. For me, just another thing to deal with!! 🙂

      • Yep, I thought I’d already replied but I guess I didn’t. 🙂 I have a hard time sitting in chairs that are really hard- it feels like my butt is coming through too. It’s also really hard on my lower back.

        Anyone ever have problems with numbness in your toes? It only happens when I’m wearing heels now or when I’m working out. I haven’t had a numb butt (yet). I’m sure you all wanted to know that! 🙂

      • Well, yeah, even my office chair got hard for my butt, and back for a while, so I took a small blanket into the office and folded it up and sat on that, and sometimes put a small pad in the small of my back. I also took a small space heater in under my desk, because my feet would get soooo cold (our secretary bought me slippers one year because of that), and would sometimes put the blanket over my legs too. The heat from that heater, (and from the floor of my car when driving) used to feel sooooo good on my legs, even sometimes when I wasn’t really cold.

  2. PT really helped with the tendonitis in my shoulders. Other things that helped:
    Heat (rice bag)
    A bra with straps that cross in the back instead of constantly trying to slip off my shoulders

    Best of luck!

  3. I’ve had tendonitis in my left hand for years, and when it flares up it is soooo painful – I can definitely empathize! I’ve read that people with RA are more prone to tendonitis, because a severe flare in a joint can damage the tendons attached to it. My left wrist has always been one of my worst joints, so I suppose it makes sense for me to have tendonitis there.

    Mine seems to flare up with no explanation, as yours has done. When it’s bad, all I can do is splint my hand and keep it immobile – much harder to do with a shoulder, I know.

    Feel better soon. Tendonitis sucks.

  4. AllFlaredUp,

    EVERTHING we get is related to RA. 😉 Having RA makes us more prone to tendonitis…another joy of the disease. But listen, did they check for bursitis? That is also very common with RA and very painful.

    And to answer your question, I started Simponi.

    Feel better soon! Update us.
    – RA SB

  5. Yes, the swelling and cystic spots in the joints will stretch out the tendons and this is what lets the bones move all out of whack. But I get a lot of tendonitis without obvious swelling, although I’ve had a slow but sure increase in swelling over the last year or so which increased MTX doesn’t seem to be helping and the wrist joint appearance has been changing fast over this time. I wear splint(s) on the wrist(s) daily now and it’s getting to the point where that’s not always helping. Although getting on a biologic might help a lot with fatigue, I’m not sure it will help with the tendonitis or not, and will probably need surgery regardless. just a question of how long i can put that off.

    Here’s a bit of what I’ve found. I tried to get the chinese article from one of the authors but could not open the pdf.
    ___________________________________________
    Ann Rheum Dis. 2009 Mar;68(3):384-90. Epub 2008 Apr 3.

    MRI bone oedema is the strongest predictor of subsequent radiographic progression in early rheumatoid arthritis. Results from a 2-year randomised controlled trial (CIMESTRA).
    Hetland ML, Ejbjerg B, Hørslev-Petersen K, Jacobsen S, Vestergaard A, Jurik AG, Stengaard-Pedersen K, Junker P, Lottenburger T, Hansen I, Andersen LS, Tarp U, Skjødt H, Pedersen JK, Majgaard O, Svendsen AJ, Ellingsen T, Lindegaard H, Christensen AF, Vallø J, Torfing T, Narvestad E, Thomsen HS, Ostergaard M; CIMESTRA study group.

    Collaborators (28)Lorenzen T, Jensen SH, Pødenphant J, Bendtsen H, Faarvang KL, Hansen MS, Hansen TM, Nielsen H, Lauritsen UB, Beier J, Ejstrup L, Knudsen JB, Laustrup H, Krogh NS, Zitelab AS, Petersen MA, Vallø J, Thomsen HS, Ejbjerg B, Torfing T, Bukh G, Frederiksen J, Rasmussen P, Theilgård K, Gerdes L, Holm H, Lorentzen KB, Pedersen-Zbinden B.
    Department of Rheumatology, Copenhagen University Hospital, Hvidovre, Denmark.

    OBJECTIVE: To identify predictors of radiographic progression in a 2-year randomised, double-blind, clinical study (CIMESTRA) of patients with early rheumatoid arthritis (RA). METHODS: Patients with early RA (n = 130) were treated with methotrexate, intra-articular betamethasone and ciclosporin/placebo-ciclosporin. Baseline magnetic resonance imaging (MRI) of the wrist (wrist-only group, n = 130) or MRI of wrist and metacarpophalangeal (MCP) joints (wrist+MCP group, n = 89) (OMERACT RAMRIS), x-ray examination of hands, wrists and forefeet (Sharp/van der Heijde Score (TSS)), Disease Activity Score (DAS28), anti-cyclic citrullinated peptide antibodies (anti-CCP), HLA-DRB1-shared epitope (SE) and smoking status were assessed. Multiple regression analysis was performed with delta-TSS (0-2 years) as dependent variable and baseline DAS28, TSS, MRI bone oedema score, MRI synovitis score, MRI erosion score, anti-CCP, smoking, SE, age and gender as explanatory variables. RESULTS: Baseline values: median DAS28 5.6 (range 2.4-8.0); anti-CCP positive 61%; radiographic erosions 56%. At 2 years: DAS28 2.0 (0.5-5.7), in DAS remission: 56%, radiographic progression 26% (wrist+MCP group, similar for wrist-only group). MRI bone oedema score was the only independent predictor of delta-TSS (wrist+MCP group: coefficient = 0.75 (95% CI 0.55 to 0.94), p<0.001; wrist-only group: coefficient = 0.59 (95% CI 0.40 to 0.77), p<0.001). Bone oedema score explained 41% of the variation in the progression of TSS (wrist+MCP group), 25% in wrist-only group (Pearson's r = 0.64 and r = 0.50, respectively). Results were confirmed by sensitivity analyses. CONCLUSION: In a randomised controlled trial aiming at remission in patients with early RA, baseline RAMRIS MRI bone oedema score of MCP and wrist joints (and of wrist only) was the strongest independent predictor of radiographic progression in hands, wrists and forefeet after 2 years. MRI synovitis score, MRI erosion score, DAS28, anti-CCP, SE, smoking, age and gender were not independent risk factors. TRIAL REGISTRATION NUMBER: NCT00209859.

    PMID: 18388160 [PubMed – indexed for MEDLINE]
    _______________________________________________
    Zhonghua Nei Ke Za Zhi. 2008 May;47(5):353-4.

    [Uncoupling effect of inflammation and joint destruction in rheumatoid arthritis: what is the relevance and implication?]
    [Article in Chinese]

    Zhu J, Huang F.

    PMID: 18953937 [PubMed – indexed for MEDLINE]

    _________________________________________________
    Arthritis Rheum. 2007 Jan;56(1):79-88.
    Tenosynovitis and osteoclast formation as the initial preclinical changes in a murine model of inflammatory arthritis.
    Hayer S, Redlich K, Korb A, Hermann S, Smolen J, Schett G.

    Medical University of Vienna, Vienna, Austria.

    OBJECTIVE: To determine the nature of the initial changes of joint inflammation occurring before, at the time of, and shortly after onset of clinically apparent arthritis. METHODS: Human tumor necrosis factor (TNF)-transgenic mice were assessed for clinical, histologic, immunophenotypic, serologic, and molecular changes at the preclinical phase of arthritis, at the onset of disease, and at the stage of early clinical disease. In addition, the effects of a genetic osteoclast deficiency and pharmacologic inhibition of TNF were studied in these initial phases of disease. RESULTS: Initial articular changes were observed even before the start of clinical symptoms. Infiltration of the tendon sheaths by granulocytes and macrophages as well as formation of osteoclasts next to the inflamed tendon sheaths were the first pathologic events. Tenosynovitis rapidly led to remodeling of the sheaths into pannus-like tissue, which formed osteoclasts that invaded the adjacent mineralized cartilage. Early lesions were associated with up-regulation of interleukin-1 (IL-1) and IL-6 as well as activation of p38 MAPK and ERK. In contrast, absence of osteoclasts led to uncoupling of tenosynovitis from invasion into cartilage and bone. TNF blockade also attenuated the pathologic changes associated with tenosynovitis. CONCLUSION: Structural damage begins even before the onset of clinical symptoms of arthritis and involves the tendon sheaths as well as adjacent cartilage and bone. These results suggest that tenosynovitis is an initiating feature of arthritis and that joint destruction starts right from the onset of disease. Our findings thus underscore the importance of immediate initiation of an effective therapy in patients with rheumatoid arthritis.

    PMID: 17195210 [PubMed – indexed for MEDLINE]
    ___________________________________

    ___________________________________
    Rheumatoid arthritis joint progression in sustained remission is determined by disease activity levels preceding the period of radiographic assessment
    Arthritis & Rheumatism, Volume 60, Issue 5, 2009, First Page 1242
    Aletaha, D.; Funovits, J.; Breedveld, F. C.; Sharp, J.; Segurado, O.; Smolen, J. S.
    ___________________________

    Amanda, it's funny how you describe your joint pain as different types of fighters! For some reason, I've always "pictured" my pain in shapes, be it lines (tendonitis) or hazy, roundish blobs of certain sizes in particular areas or more shapeless if it's somewhat generalized achiness over a larger area. I've had a spot on my forefoot that has felt swollen when I stepped on it but then don't see swelling there when I look and it comes and goes. I wish there was a more standardized way to describe all this to docs, who, not having RA themselves, often can't seem to grasp what we are trying to describe.

    PS I've had somewhat similar doc experiences to yours too Amanda.

  6. How’d the follow up appt go, and did you start any PT for the shoulder yet, Amanda?

    Although it seems morbid to go on about symptoms, I’d like to hear more specific descriptions of other RA’ers types and locations of pain, if for no other reason, that just to see if “it’s all in my head” or not! 😉 I’m thinkin’ “mostly not”!

    I’ve not had numbness in toes, but must admit it’s been a long time since I’ve worn heels! Lately, I get what I’ll call “roundish” spots of pain in various spots in my forefeet and the bottom of my heels – kinda like the butt thing, as if there’s no fat pad between the bone and the surface you’re on. Usually it’s just one spot at a time in one foot. Today it’s been flip-flopping between feet and between spots, so that’s a first.

    I do have a big, deep-seated fluid-filled cyst on the bottom of one big toe (yuck, I know) and surprisingly this is not usually painful. Though before it developed I did used to get sudden sharp shooting pains in that toe, usually at night when I had my feet up. I haven’t had the money/insurance to get to a podiatrist to have this checked out yet, though it keeps getting bigger and the fluid is eeking under the skin to the side of my toe now. I asked my rheumy a long time ago if she could give me a cortisone shot there to see if it would make it go away (it may have started due to a very small rheumatoid nodule). But (and although she’d done shots in my finger knuckle before for trigger finger due to nodules) she said she was too nervous to try that with my toe, that she was afraid she might injure a tendon or something. Go figure.

    I emailed an online foot doc a while back and he said draining it probably wouldn’t work due to the type of fluid that is probably in there, that it would just come back, and that I will probably have to have surgery to remove it. Anyone else out there have anything like that before?

    Amanda, do you much activity that you use your arms overhead much? I really don’t, aside from curling my hair and using hangers with the laundry. I often have periods of achiness, aside from the tendonitis and bursitis episodes, in my shoulders though I’ve never had visible swelling in them either. I still have most of my range of motion in them though so my rheumy never seems concerned about them at all. I’m sure I’ll need shoulder replacement surgery someday though, given that my aunt had one done, and my mom would’ve by now if she hadn’t had a stroke, though their’s are “arthritis” I guess their’s is not RA though.

    One other funny note. The first signs of RA I had were in a knee and an elbow, tendons I guess, no swelling, about a year and half or two before I actively sought treatment for feeling like a 90 year old all over and having wrist pain. But the elbows and knees have been fine for me all these years so far, thank goodness. Isn’t that strange? A few small pea sized nodules in the elbows that went away after several years. But it’s weird I haven’t had problems with those since they were the very first signs.

    Right before it really hit me hard and made me see a doc (hadn’t been to one in years otherwise), it was the arches of my feet and the bottom/back of my heels with first painless snap/crackling sounds when I’d step a certain way, and then pain on the bottom of the heel while walking. Then the feet seemed to be mostly pain free once I got diagnosed, until this last couple of years when I started working on my feet again. Although, I’ve watched the forefeet painlessly widen over all these years. Just thought this was odd but oh well. Then I got shoulder tendonitis/bursitis, bad like yours, but even then I didn’t know it was RA or think anything else for sure was going on. It was my wrists that took me to the doc, though I had been experiencing lots of fatigue and “gelling” overall the summer before that, but I was doing a lot of weekend warrior yard work so figured it was just that. The story of that doc is for another day since i’ve gone on way too long already.

    So my onset was “insiduous” I guess. Once it fully hit though, it did hit hard and fast then. How do everyone else’s start ups go?

    • @Chelsea – that thing with your feet really sounds like plantar fasciitis. There are some pretty simple exercises /stretches that might help. When you get to a podiatrist, the first line of treatment is the exercises (not sure if the doctor gives them to you, or if you get a referal to PT). The next step for me, since it got worse again (admittedly, I’d given up on the stretches) was orthotics. Now I have custom orthotics and have to wear shoes all the time. My feet still hurt, but nowhere close to as badly as they did before. The podiatrist recommends taking an NSAID (the rheumy’s goal is to get me off them).

      The butt thing: sigh RA is great for anatomy lessons. Who knew there were joints in your bottom and you could get tendonitis there?

  7. Pingback: How many RA-ers does it take to change a lightbulb? « All Flared Up: An Arthritis Blog

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