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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

60 Replies

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  • Diana112
    Diana112 noninoni

    Posted

    Hi noninoni - have just checked the definition of 'stiffness' which says 'unable to move easily and without pain' which definitely puts things in a nutshell for me.
  • twigjean
    twigjean noninoni

    Posted

    My story - February 2013 I had pains in my groins. As I am a yoga doer I thought I had pulled a muscle and worked to stretch it out. There after every two weeks went to my GP complaining of stiffness not so much pain just stiffness. By middle of February I could no longer get to the floor my knees were so stiff I thought I had rubber bands around them. This stiffness moved to my shoulders than wrists. There was no hope of yoga. So my GP finally sent me to a rheumatologist and by 1 May I was 15 mg of prednisone which immediately relieved my symptoms. I guess I am one of the lucky people because I have never had much pain. A lot of fatigue and tiredness, I can take three naps in the day.I have had one flare and am presently at 6.5 milligrams. It seems we all have many different symptoms and reactions. This forum has been interesting and love read what's happening. It saddens me to hear some of your tales. basically I take my Prednisone and listen to my body and sleep a lot. I tried a yoga class yesterday and I just can't do it yet. So sad.
  • twigjean
    twigjean noninoni

    Posted

    P.S. I'm of English, Dutch, and German descent in USA
  • noninoni
    noninoni

    Posted

    Yes the genetics is interesing for PMR.  I am almost entirely British.  It got me thinking a lot about British history and all the Vikings that conquered and established themselves everwhere- the Danelaw, the Angles (who came from just south of Denmark), the Norse still spoken off Scotland, etc,  and the Normans who were originally just another group of conquering  Vikings. 
  • barbara75814
    barbara75814 noninoni

    Posted

    Every time I read about the "stiffness" symptom in connection with pmr, I think:  STIFFNESS? "I don't have stiffness!! -- I have PAIN! 

    I don't know who conjured up all the stiffness talk, do you? Some stiffness never made me think of screaming, but pmr pain certainly has. 

    Before I was diagnosed I used to lecture myself not to scream when getting out of bed and onto to the floor every morning, but a lot of times I found myself screaming anyway, the pain was so fierce.

    I just wonder why the word "stiffness" is more prominent in rheumy talk than the word "pain." Q: any ideas?

     

     

    • Sheilamac_Fife
      Sheilamac_Fife barbara75814

      Posted

      Agree totally Barbara! I live in fear of that pain returning. Cannot imagine feeling like that about some stiffness!!

      Sheila

    • twigjean
      twigjean Sheilamac_Fife

      Posted

      . The UK is about six hours different from where I live in the USA. Upon waking this morning the thought came to me that I had forgotten in the time  beforer the diagnosis I was maxed out on ibuprofen and acetaminophen. I had to keep a chart going to figure out which pill I could take. The pills didn't help anything. Which I have now learned is true of PMR- from this forum. It's odd that what I remember is the stiffness and not the pain. 

      It seems to me that with all these different descriptions at the beginning of PMR,how difficult it must be to make a diagnosis. Once I describe the pain to the rheumatologist and he said that pain on only one side of your body was not pain from PMR. He was saying I needed the same pain on both sides. Because I'm 74 I think I have pains of age. So complex!!!

  • noninoni
    noninoni

    Posted

    I finally found one site- from a NIH government website- that mentioned "bilateral upper arm tenderness" in the PMR diagnosis, which is one of the things I described to my rheumy.  Press on the upper arm and it hurts. But that seemed to make my rheumy argue against my having PMR!  

        After my description of what she said, Eileen commented "she doesn't have a clue". 

        You are really going to laugh at this, but at Yale University Med School Public Health when I was there, there was a frequent saying: "just because he's a doctor, he isn't necessarily stupid."

           

    • EileenH
      EileenH noninoni

      Posted

      Ah yes - I was at medical school for a year until I realised I didn't want to be a doctor that much! I have many good friends who are doctors, of varying abilities and types. Noone I would classify a prat. But I know quite a few medics of one sort or another who I have met professionally who I would classify like that. Thick as mince (as Scots say) in some cases. Doctors because they can pass exams and daddy had enough money to send them to uni (because it often means private education beforehand).

      My biggest objection is the ones who think they know better than the broad scope of the literature. There are things in the literature that I and a lot of patients have experienced first hand - and I meet doctors who say "Oh no, that doesn't belong to PMR..."

      And some medics are just biological engineers. Doesn't matter if it works or not - pull it apart and hope you can put it back together again...

    • snapperblue
      snapperblue noninoni

      Posted

      Why would upper arm tenderness be inconsistent with PMR?

      In the list of current research projects in one of the links on this site, there is a study on a method to quantify pain in PMR using a blood pressure cuff over the tender area in the upper arm.  It is not spelled out, but I imagine you pump up the cuff and note at what pressure the patient starts to scream!  So someone thinks this tenderness is central to PMR.

    • julian.
      julian. snapperblue

      Posted

      on the upper arm tenderness - it hurt when I pressed around the end of one of my tendons - my doctor commented "perhaps there is a bit of tendonitis there also".

      Possibly a different tenderness to what others are describing. All very complicated.

  • noninoni
    noninoni

    Posted

      So why did we think so little of doctors?  because they think they know how to do research;  it is so easy to get  a computer program to do the so called statistical anaylsis, all without any real understanding.  Most of the time they make a terrible mess of things.  It is almost impossible to find a "good" paper without huge, glaring problems.

          But they aren't the worst.  Engineers are the worst. I have worked for all of the above and more.

  • noninoni
    noninoni

    Posted

    And one more thought: in contrast to a lot of medical research, pharmaceutical companies usually do a very good job of clinical studies because the FDA monitors their every tiny step so closely.  The FDA has some very good statisticians in their employ.  And, for the most part people who work for pharmaceutical companies are quite ethical.  But human/ drug variation is such that not everything is caught during clinical studies, especially rare occurrences. 
    • julian.
      julian. noninoni

      Posted

      I beg to differ. The motivation for pharmaceutical company sponsored trials may be different to pure research.

      Just one of several throughts - possibly aimed at deciding if a drug is safe and effective, which is different to aimed at finding the lowest effective dose. There are many ways in which the purpose of a trial may alter the outcome.

      In general I consider the results from very large samples demonstrating very small effects to be of questionable value when mapped to individuals.

      I await (not holding breath) personalised medicine.

    • noninoni
      noninoni julian.

      Posted

      Yes, the higher administrations of pharmaceutical companies are definitely motifated by profit, but the scientists are generally pretty good people and motivated more by the desire to do good science and help others.  The FDA in the past has been a very good watchdog over the pharmaceutical companies so I dearly hope their funding isn't cut.

      This oversight is expensive.  Medical research elsewhere is not subject to the watchdogs of the FDA.  Another huge problem has been overly profit-minded companies taking over other smaller companies, and killing  good research if the profit isn't right there.  I once saw some really good tuberculosis research killed that way- my company was willing to do it pro bono, but another co-developer of the drug felt tuberculosis wouldn't be sufficiently profitable.  That was very disappointing.

       

    • EileenH
      EileenH noninoni

      Posted

      "Medical research elsewhere is not subject to the watchdogs of the FDA"

      Maybe not - but it is subject to regulation which often makes setting up a study so complex it dies a death. My husband developed a cheap continuous oxygen monitor which would have been perfect for the 3rd world, far more useful than pulse oximeters in some of its features - but big business realised the potential and killed it. 

      But what needs doing here is not the sort of stuff pharmaceutical companies are interested in - it is basic research and no money...

    • noninoni
      noninoni EileenH

      Posted

      Doctors get hold of some data- from a public database, their own hospital, or elsewhere, do a so called analysis, and get it published.  Doctors may get data from their own practice or their own hospital.  This kind of thing is not subject to oversight as the data already exists.  In the worst case scenario, the analysis may be completely faulty.  In the best case scenario these so called studies will lead to new hypotheses which can be tested with a prospective study.

             Let me give you a funny example.  There was a study done in a New York hospital that concluded that blacks don't get alzheimer's disease!  For many, many years doctors believed that in the U.S.  Finally someone realized that the hospital served an area populated by young blacks and very old whites.  Young people do not get Alheimer's!  

             In contrast,  a proper prospective double-blind clinical trial is a different matter and will certainly be subject to oversight. 

    • noninoni
      noninoni

      Posted

      I should add that meta-analysis always uses pre-existing data and can be done without oversight, as can similar restrospective studies of most any sort.  Those studies I was talking about that ignored the severity of disease yet predicted more side effects with higher doses of prednisone, those studies were of this type.  Useless.
    • EileenH
      EileenH noninoni

      Posted

      Then it is up to us who know how to do a critical assessment of their methods - and that is why I warn people generally not to look at a) media reports and b) the internet unless they know how to look at it!

      I had never heard that one - but so much that is in the media is of a similar standard. Have you ever heard about the background paper that someone uses for justifying eating fish to cure heart disease (or something equally daft!) and selling his "diet plan" stuff. It was a study of death rates during WWII in Norway. Cardiovascular deaths plummeted during this period and that correlated with the diet changing dramatically to include vast amounts of fish. Of course it did, the blockades prevented food imports and the Norwegians could get fish easily. What really happened was that people died of other things, like in fighting, bombs falling, actions of war. They often didn't live long enough to develop heart disease. The equally valid correlation would have been that war cures heart disease...

    • EileenH
      EileenH noninoni

      Posted

      As I've mentioned, there is (we hope) about to be a "proper" study on long term side effects of pred therapy. 

      I have few problems with doctors demanding I reduce pred because of the long term side effects - it does seem to be an English-language fear! Maybe non-English speakers recognise dodgy studies more easily. Or, which is more likely, the non-English papers aren't read in the UK and the USA but present a more balanced view!

      There was great surprise expressed when I told the research bunnies that corticosteroid is not just corticosteroid: for me, ordinary prednisolone was fairly OK, methyl prednisolone was truly awful and prednisone is now also OK - at similar doses. Other people are fine on Medrol - I wasn't.

    • noninoni
      noninoni EileenH

      Posted

      It would be interesting to compare and contrast prednisone, methyl prednisone, etc. and that kind of thing could be done in a valid way.  You would need a large patient population randomly assigned to the different forms of steroids. The patents are off prednisone... it was developed in the 1950s,  and so pharmaceutical companies would not be in the least interested in this kind of study: no profit.  It would have to be government sponsored. 

             If many patients are like you, Eileen, and cannot tolerate certain forms of steroids, and if they stop taking them in the middle of the study, that would be a tricky thing to analyse!!  It could be done though. 

    • EileenH
      EileenH noninoni

      Posted

      It would, we have thought of that! The greater problem is getting the large patient population - it would mean coordinating it as an international study and the randomisation would be difficult. You would have to have different groups according to indication if you were just looking at the substance in general. Here they use Medrol, it just so happens my GP gives me Lodotra, which in the UK is only approved for RA and is expensive so they won't wash using it for most patients. In the UK they don't use prednisone. So without cooperative drug companies nothing will happen. 

      I don't think it had occurred to them that some people might be fine on one form but not another - I know no one else who has been on different sorts of corticosteroid consecutively and they hadn't seen it either.

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