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stiffness versus pain

Posted , 12 users are following.

noninoni
noninoni

I have just been reading "clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica" and here too they seem to distinguish between stiffness and pain.  The authors seem to believe PMR people should suffer stiffness, especially morning stiffness,  but not pain, although "aching" was OK for PMR.  It is a very interesting article with a long bit on the differential diagnosis of PMR.  

     I do know there is can be a difference between stiffness and pain: my late husband had Parkinson's and was very stiff, but never complained of pain.  But I was thinking about the people on this forum, most of whom do complain of pain, sometimes "screaming pain".  What kind of pain?  How is the pain manifest?

       In my case, it got to the point that a simple shoulder massage was unbearably painful.  If  you pressed on the muscles in my arms, it hurt.  For awhile I tried trigger point therapy and that helped:  press on a muscle knot and it will resolve in a couple of minutes and go away.  But after awhile that didn't help and I couldn't find muscle knots to press.

Is this typical or unusual?

      I did suffer the "gel" phenomena of getting out of a car after 15 minutes and being unable -or unwilling- to move for a minute or so.  But I don't remember stiffness being worse in the morning.

      So I wonder what experience others have.  Do any of you have stiffness without pain? 

      

 

3 likes, 60 replies

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  • pat73046
    pat73046 noninoni

    Posted

    I don't know anything except what I felt but the first time diagnosed I felt as though I had ground shards of glass in both hip joints. Especially going up and down stairs. In four months I was using a walker and filed for disability_-- got it in 6 months. I felt pain more than stiffness. pat
  • EileenH
    EileenH noninoni

    Posted

    We've been discussin this in the research group - who need to be able to have criteria for diagnosis and assessment of therapeutic success.

    If it had just been stiffness I could have coped with that. It was the muscle pain as you tried to move for the first time that got me - I was in tears because of the pain, like the cramp you get as a limb comes back to life after blood flow being interrupted. Thinking about it - it is probably much the same cause too. That improved as I could start to move but the first stage was excruciating.

    I had pain in the hip joints too - bursitis. That got more painful if I tried to walk too much. I had the tender muscles too - I could feel the "fingerprints" for half an hour or more. Especially biceps and shoulders.

    And I had synovitis/tendonitis in my hands and that was like needles sticking in when I bent a finger. Plus what was thought to be RSI in my forearm muscles - which made holding anything like a cup or bottle almost impossible.

    Yes, I had stiffness, definitely stiffness, like when you get out of a seat after a long journey - but it lasted hours. And I had pain. Constant, low level, nagging pain for the first 5 years and excruciating stabbing pain that reduced me to tears when the PMR went mad after 5 years. That period lasted 6 months, until I was allowed pred.

    • EileenH
      EileenH constance.de

      Posted

      "like a cup"? Though they were easier, I could hook my fingers through the handle! I could forget those daft fancy china cups with wiggly handles - big open handled mugs you could get both hands round! You feel such a numpty holding a wine bottle with both hands in an attempt not to drop it while pouring a glass. People might think you were drunk...
  • snapperblue
    snapperblue noninoni

    Posted

    Thanks for raising this.  It seems like a hugely significan different that is glossed over information on PMR and maybe by doctors.

    I have been puzzled/annoyed by the description of PMR symptoms as stiffness and "aching."  ACHING!  On my discomfort scale, if you are gasping and yelping, you have gone beyond "aching."  

    Within 3 days of my first symptoms, rolling over in bed at night was excruciating and involved a lot of.. vocalizations (let's not say yelling). The pain was in my hips, legs, and arms- I'd never realized how much I used my arms for support to roll over.  I could not lift the blankets off myself in the morning (because of arm pain) or sit up, so would kick my way free and roll off the bed.   Yelping or whimpering, I'd gradually straighten up, then start the Godzilla stomp (no spring in my step!) down the hall.  Then the challenge of going downstairs!



    The hip and trunk pain would be gone in a few hours (except getting in and out of the car) but the arm pain persisted.  I'd use one arm (with elbow pressed against my side) to lift the other arm high enough to operate a light swtich or brush my teeth.



    On 15 mg pred, there was some, but little improvement.  On 20 mg, the hips are better but the arms still hurt on movement inthe morning.  In the 10 days I have been on this dose, I have had 2 relapses with pain in the legs and hips and severe arm pain that lasts to mid-afternoon. (Severe means I can't move the arm, rather than being able to move it, but it hurts.)  I found myself choosing my route in the car by the fewest times I'd need to move the steering wheel.

    My GP says to stay on this dose...  

    • EileenH
      EileenH snapperblue

      Posted

      I was like that and in very loud "OUCH" pain when the PMR went wild - but had had it for 5 years at a far lower intensity where it WAS just aching. There is every level of pain to be found amongst the hundreds of patients I have come across. Being unable to turn in bed is very common - and typical really. 

      One of the very early things I noticed was the lack of spring in my step - I could no longer step up in step classes and my legs didn't want to do what I wanted them to. 

      Some of the symptoms you describe, arm and leg pain especially, are taken as indicative of GCA, or at least large vessel vasculitis (LVV), affecting the arteries in the thorax and abdomen. GCA is a LVV, LVV does not have to be GCA. But many GPs are unaware of that distinction and there is this unshakeable belief, even amongst many rheumies, that GCA must cause headaches and visual symptoms. When you have these symptoms there seems to be a link to a longer, more convoluted journey, maybe because you are started at a lower dose than is really effective on the inflammation.

      Whatever dose you start on that achieves relief of the symptoms, you need a good 6 weeks there without reducing. Then, if the symptoms are well controlled and (maybe) blood tests are OK you can try a reduction. But most docs will say 2.5mg or even (god forbid) 5mg steps - that is often too much in one go. 10% of the current dose has been recommended by top experts for years - do they listen? Not often. They reduce in 5mg steps with other illnesses, so that's what they want to do here. 

      But ask yourself: when I felt better, did I do more that day? Did I then feel worse the next day? It is a common mistake and if you do it - you feel worse again. It will improve but it may take weeks, even months before those arm and leg pains fade reliably. If it is from bursitis or tenosynovitis it will usually take months with oral pred, cortisone shots can get faster effects. 

      But many doctors believe - I wish I knew why - that once you are on pred you will be fine and it won't hurt any more. And of course - despite their terror of pred and its side effects which makes them reluctant to let you try it - they think being on pred won't make you feel funny/manic/tearful/bloated/whatever and, just maybe, not fit to work. 

    • jean39702
      jean39702 EileenH

      Posted

      Snapperblue and Eileen you take me back to my own experience with pain very well.  I gave up sleeping in a bed and spent a few weeks dozing in my favourite chair while being diagnosed.  Treatment for PMR began with prednisone at 20 mg in March 2014 with some limited relief; dose was increased to 25 mg 3 days later.  Four days after that I had a complete meltdown.  I could no longer even get in and out of my favourite chair!  The pain in my arms, shoulders, neck, hips and legs was unmanageable.  I was ready for walker, a raised toilet seat, and hospital bed! Prednisone was increased to 40 mg and within 12 hours the pain had almost disappeared.  In 24 hours I was a new woman.  Most amazing of all I could run down (not up) stairs for the first time in 10 years.  I had undiagnosed problems with heavy tired legs for that long. 

      I wasn’t as wise as I am today after reading all of the helpful advice on this and other forums and followed the medical advice to taper by 5 mg every 2 weeks.  This resulted in a relapse at 25mg and a return to 40 mg for a month.  Thanks to a slow tapering regime I have successfully reduced to 16 mg currently.  Unfortunately, my leg issues returned after the relapse and have stayed with me over the past 9 months. 

      Eileen, I found your comment about leg pain being associated with CGA very interesting.   Prior to the PMR diagnosis I had numerous tests (lower back scan, leg x-rays, leg blood circulation), physiotherapy, compression stockings, etc. over the 10 years trying to determine what the issue might be and/or achieve relief.  All to no avail.  Once I received the PMR diagnosis I was told that PMR is likely the cause.  I confirmed this with my practitioner just last week as the condition continues. 

      I’ve always been very concerned about the 40 mg dose, but perhaps that was a good thing? 

    • EileenH
      EileenH jean39702

      Posted

      Often PMR and GCA are presented as being "different but related". I think it is more likely that it is a broad spectrum and depending on which bits are affected it is easier or harder to treat. It is pretty much accepted that GCA is a vasculitis of large and medium sized arteries all over the body, it is very likely that PMR is a vasculitis of the microcirculation, the very small blood vessels. Unfortunately, it is only when GCA affects vision that everyone jumps (if you are lucky) and a high dose of pred given because of the fear of loss of sight. But GCA is NOT necessarily "temporal arteritis" although the names are often used interchangeably. You can have GCA in other arteries without your vision ever being affected - but it is still a more active version of PMR and possibly requires more pred to get it under control.

      I've heard lots of people complain of heavy tired legs - I suppose if I think about it, that fits what mine felt like. I often wanted to use my hands to pull my leg up to the next step. If PMR is a problem of the microcirculation that might cause that sensation - but would never appear on the usual tests. It is being looked at.

    • kathy67492
      kathy67492 EileenH

      Posted

      Very interesting conversation about pain and/or stiffness. I was extremely stiff and had some pain in the beginning of the PMR, but now I am not stiff in the a.m., but stiff and in pain in the night. My legs are killing me...particularly my left. My feet are sore, one much more than the other. I am going to make an appointment to have my left foot and knee checked...but who to see?...my rheumy or my ortho? I don't think my rheumy will make a connection to my PMR...he didn't when my foot was a problem early on.

      Saw a podiatrist...he didn't think it was anything except navicular tuberousity...no treatment. My legs are more painful than stiff.

      I started on 15m for one week, then 10m...and continued to yo-yo thru the whole first year...flaring. Wish I had found this forum right away!??

    • EileenH
      EileenH kathy67492

      Posted

      Don't really know - your system is totally different from Europe's (I'm assuming you are in the US as we would have to go via the GP whatever). I would wonder if it is a back problem - possibly a back muscle problem. But who to see? The ortho I saw didn't recognise it  - it was the doctor in the pain clinic who realised my back muscles were so hard there was no wonder I had pain. Both she and a physio were surprised he hadn't found it - but put it down to orthos only thinking bones! At this point the presenting problem was low back muscle spasm due to sacroiliacitis and the first line treatment here caused atrial fibrillation so they had to go the second, much slower route in the pain clinic. But it was worth it.

      Since I've found it helps - what about trying Bowen therapy? It is a complementary very gentle manual therapy - you'll see why I suggest it if you google a site called bowen4life where there are videos and an explanation of why the podiatrist who does the site uses it.

  • noninoni
    noninoni

    Posted

    I am thinking that "stiffness" is moderate pain, a classic symptom of osteoarthritis rather than PMR.  For example, my horses used to be stiff for the first 5 or 10 minutes of exercise, and would appear to be a little lame.  Then it would go away.

    I am happy to believe I have both osteoarthritis and PMR, but the PMR just brought the pain to a whole new level!!

          I really laughted when snapperblue described the blood pressure experiment, because when I had that tachycardia before Xmas my BP went through the roof and the BP cuff gave me "screaming pain".  THey seemed to be surprised when I said the cuff pain was far worse than the 2 IVs they were installing at the same time.  It hadn't occurred to me that PMR could be a contributer!

          

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