stiffness versus pain

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? 

      

 

In the early days in particular stiffness was very evident - as if I had overdone it at the gym the day before. Though I did have buttock and back of thigh pain especially when sitting down. I would never describe any of it as agonising pain though. "Painful stiffness" is the term i prefer - just to confound the rheumatologists....

I shoul add that in my case there is a possibility that I have PMR-induced inflammatory arthritis according to the "experts"....

Hi!  I had pain all the time, right from the beginnng, still do 3 1/2 years later.  I can't remember having stiffness in the shoulders, just pain.  In fact, stiffness hasn't been a problem really.  Weakness, yes!  Mega tiredness, yes!  What a bunch we are!

Hi noninoni, At 4am in the morning I woke with no pain or stiffness so went back to bed. At 7am I could not move from the waist down and had excruciating pain each time I tried to move my legs and stiffness was unbelievable. Now, 7 months down the line if I do overdo it I tend to have stiffness first thing but no pain. This is probably the preds doing their work but personally I believe the two go hand in hand and that pain is only one symptom of an ailment, there are loads of various ailments suffered by victims of PMR, pain and stiffness being the main ones.

Hello: I was diagnosed in sept. 2014. I wake up feeling sore. My stiffness arrived mid day, depending on the weather I have pain.  Everyday is a surprise ! 

Noninoni, I think this is an interesting but difficult topic because we can all perceive pain and stiffness differently.  

You might be interested to read that a project on Stiffness in Polymyalgia has been carried out  on groups of patients in different parts of the UK., and putting all the results together provided some final findings:

Firstly, stiffness was related to three overarching themes of perceiving, thinking and doing.  

Secondly, stiffness was preceived as being different to pain or fatigue but with variable overlap.  Patients thought about stiffness in very diverse ways, the expectation of worsening in the morning also had a cognitive impact.  Stiffness prevented patients from carrying out activities, including fundamental activities of daily living.

Finally, numeric rating scales for stiffness were seen as problematic by many patients, but were more acceptable with anchoring words to define what was being measured or with comparisons between different times of day.  Assessment of severity by assessing function made more sense to patients.

The study suggested that a core outcome set for PMR should include the symptoms of pain/ache, stiffness/restriction of movement, and inability to perform everyday tasks.  These different symptoms may relate to each other in a complex way and this should be incorporated into study design and plans for analysis.

Hope you find that interesting and it helps to answer your questions.

Oh noninoni, how much time have you got? All I can tell you is in sep 13 I woke up in the morning with a pain on the right side of my neck, it was a pain that I had never experienced before but throughout the day it sort of got better but by nighttime the pain got worse. After about 3 days I thought I must have trapped a nerve because as I said it was a pain that was new to me. The pain over the week just got worse and had spread to my shoulder joints, over the next 2 weeks the pain had spread to my shoulder blades, tops of my arms, I ciuld lift my arms, hips, bottoms and to the rear of my knees. When I woke in the morning the pain was terrible but the pain died down throughout the day but come the evening got worse again. It was at this time that I visited my GP.

over the next two months the pains simply got worse and worse. The pain was like sitting out in the sun, getting very, very sunburnt, then digging long sharp nails into the burnt skin and scratching the skin. That's the only way I can describe the pain but the intensely was way, way more than that. I then got shooting pains across my shoulders and down the tops of my arms, they resembled shooting nerve pains. By the time I saw the consultant I also had pain in both thumbs, the outside of my left wrist, my entire rib cage including a terrible pain to the left of my sternum just under my breast bone.

if I lay down or sat down and didn't move then I had no pain. I had no swelling and mostly if i touched myself I did not experience any pain. But if I moved at all, my god the pain was unbelievable. I couldn't sleep because I could not get comfortable in bed and of course I didn't want to move because of the pain.i could not get in or out of bed or a car without help, and if I drove the pain in my upper arms when I changed gears was unbelievable. I couldn't kneel or bend forward because of the pain. I couldn't turn my head from side to side because of the pain. If I went to the toilet the pain bending my knees and hips when rising up and down was unbelievable. I couldn't carry anything heavy as my upper arms pained do much, I couldn't climb up stairs and when I tried to get in the shower I couldn't left my left leg not 8 inches to get in the shower. My husband bought me a foot scrubber thingy so my feet could be gleaned because I couldn't lift my feet up. When my husband wasn't looking I cried and cried because I felt locked in a body that if moved was so painful.

but did I ecperience stiffness, well that's interesting because the pain was so bad that I simply couldn't contemplate moving and so stiffness set in and I suppose it could be argued that I appeared to be stiff because when I moved I moved with very little movement because greater movement resulted in greater pain which was something I could tolerate. So maybe looking back, I wasn't stiff it just appeared to an onlooker that I was stiff because I didn't want to move. However, saying that following being helped out if the car it did take me a few minutes to straighten up and start moving. So maybe I did experience stiffness

i've just looked back to your thread an you have used the word 'screaming' as a description of the pain and I think that is a very good description whilst I could never describe my pain as an ache. 

Throughout this time the pain was definately worse in the morning and throughout the day the pain did lesson especially my hips when I tried to keep walking hoping that the pain would go away.

i took my very first dose of 15mgs of prednisone and within four hours I was walking up the stairs, turning my head from side to side and the pain except for a few places was all but gone.

hope that helps you, noninoni, christina 

a bit of qualification first .... I was traveling when symptoms first arose with little hope of an effective diagnosis (locals more used to typhoid, malaria, not obscure pain). I also suspect early symptoms were obfuscated by nerve pain from neck after "the bus ride from hell". And we'd stopped for a rest so lots of cleaning and polishing of truck. Self diagnosis is very difficult. We had few alternatives to carrying on.

So with that background, here's my (possibly unconventional) summary of pain.

Stiffness was noticeable when climbing out of truck after driving (average 100km/day on rough roads). Also noticeable in legs after walking, as little as 2km. 10km on hills was major and exhausting. A day's sight-seeing had to become half a day. Then rest. At all times I couldn't take my normal stride. Shorter than normal. At the extreme was mild pain, localised at inside top of thighs, but it was the stiffness that limited movement. The longer the step the greater the effort. Like fighting an elastic band.

The pain in upper arms was always there. Right arm worse than left. Outside of upper arm. Press and it hurt.

Sharper, more intense, when I caught an arm in an unusual position. Either behind or above shoulder (when I could get them that far) or reaching for something. I learned not to reach for things - not hard, I'd had to change behaviour 25 years earlier with back problems and our truck is ergonomic.

Rolling over in the middle of the night I didn't have much control over. That's when most of the screams occurred. Sharp, localised, focused, intense, excruciating, pain. On top of the more diffuse background pain. The focus is "inside" my muscle. Worse or better as arm position changed. Get my arms to best position and use all the relaxation / pain management techniques I knew. My wife thought I was practicing for a birth. It could subside to a duller pain after several minutes, still with the same origin, but not as localised, a little more diffuse. But chronic pain that never went away.

Taking off or putting on a tee shirt was interesting. On a good day (before pred) I could just manage. Either my arms wouldn't move where they should do or the pain was too sharp.

"Stretching" for things involved an emergency disconnection of battery. Mind over matter. Sharp excruciating, pervasive, pain. So intense I could hardly concentrate. A wall between me and the battery. No alternative than to move my arms where they had to go. Use left arm to move right arm and hope it stays where I put it. Be methodical. Turn the spanner a little at a time. Quick before the truck goes up in flames ......... A bit melodramatic but it was screaming bright red sharp burning pervasive pain in upper arms like I have experienced only a few times in life. Everything all at once. And unavoidable.

Very different to the cramps I currently get in the middle of the night in my calf muscles. That's just annoying. Soccer players must be babies!

Just for fun I also have leftover numbness in one leg from back problem. That seems to be more sensitive currently. I mention it simply because its another variety of "pain". Very much surface, spread over a large area. Have to touch it to notice it. I'm hoping the pred is not masking the return of back problems. Nerve pain (of squashed nerves) is different again.

Driving was easier than being passenger. I had the steering wheel to hang on to. Turning the wheel caused the arm pain to sharpen. Basically movement was painful. Changing gear was a challenge. Grin and bear it, drive to avoid gear changes.

At times it felt that my leg was weaker than normal. The clutch is quite heavy.

My hands were visibly swollen and stiff. More recently (three months after start of pred) there's no visible swelling but the first part of my fingers attached to hand are both stiff and painful. A rather nice pain (if that's possible). A background pain, along the length of the bit between the joints, that intensifies when I do anything with my hands. But not debilitating. Not limiting. The sort of stiffness/pain experienced after a lot of exercise. Not something that stops me using my hands.

For me diffuse stiffness, ache, sharp pain, are just descriptors on a spectrum. I don't categorise things well. For some reason I mildly think in terms of brown through orange to describe my PMR pain. But that's not much use to most others I talk to.

Basically I find our language is not very good for describing "pain".

Perhaps another aspect is the sense of PMR as a wave washing through me. What started as a mild irritation in one arm and a shortness of stride seems to have slowly washed through me. I have a sense that my right arm is no longer "worst". That my left arm has become worse then improved. That my upper legs are more stiff. That whatever it is has washed into my lower legs, feet, and of course hands. Either wishful thinking or reality. I'll know some day in the future.

For some reason I think a little pain is useful. It gives me a sense of where I'm up to. I can tell better or worse. I can pace what I do. A flare is not something or nothing, for me its worse then better. But never gone.

In early life I learned that pain is a warning. Change what I'm doing before I do some more damage. Later I learned that there can be pain without doing damage.

One aspect of PMR which I haven't quite understood yet is whether the pain is associated with damage being caused or an outcome of the inflammation. I'm guessing its simply an outcome. A symptom. Not a reason to not move.

When finally diagnosed the effect of the pred was noticeable within hours. From having to think about and struggle with every little movement to mindlessly running up stairs three at a time - how good was that?

I probably wrote the above just to confuse and confound the statisticians and those who want to put things in little boxes. And writing it down helps clarify for myself what I'm dealing with.

I'm 65, reasonably fit, active but lazy, and btw noni, a meagre male.

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.

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.

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

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. 

Totally describes my experience Christine! The worst pain ever!!

Sheila

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?

 

 

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

Sheila

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."

       

  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.

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. 

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

I bet you wouldn't get disability allowance now Pat!