PMR affecting hands & feet: A while back I asked... - PMRGCAuk

PMRGCAuk

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PMR affecting hands & feet

29Pain00 profile image
34 Replies

A while back I asked this question and got a lot of feed back. Someone even posted a link to a research paper. I am going to a new doctor and the first thing she said was PMR doesn’t affect hands and feet so she says she doesn’t think I have it. I can’t believe I am going through this again. Any feed back would be greatly appreciated again. Thank you, 29Pain00

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29Pain00 profile image
29Pain00
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34 Replies
Yellowbluebell profile image
Yellowbluebell

One of my symptoms was really achy hands and the only way i could describe it was like flu in my hands!! A stupid description but it was what i told my gp and he used that along with pain in the "normal" places like hips and groin along with my blood results to diagnose pmr. I am sure others will be along in a bit with more help.YBB

CT-5012 profile image
CT-5012

I had pains all the way from my shoulders to my fingertips. I discovered later that the people who drew up the list of symptoms considered including this but didn’t as it was not a common problem. Good luck with educating the new doc.

Here is a quote from nz paper distilling UK research (couldn't find original at moment). It does go on to say that differential dx of RA should be investigated. I have bad hands and feet too and had all the bloods for RA etc. Negative.

"Peripheral symptoms

Symptoms, such as pain or stiffness in the joints of the hands and feet, are present in approximately half of people with polymyalgia Rheumatica......"

bpac.org.nz/BPJ/2013/June/p...

bunnymom profile image
bunnymom in reply to

This was very helpful. My hands frequently ache and now my knees have joined in. Glad to know it will all eventually go.

Joanbill13 profile image
Joanbill13 in reply tobunnymom

Me too. I love this site. Love,y to know you're not the only one

Blearyeyed profile image
Blearyeyed

Blooming Ignorant Doctors !!!😣😣😣😣

Many GCA/ PMR sufferers have problems with hands and feet.

Even if it isn't common to PMR , you can still be suffering with Nerve , Joint or Muscle Pain issues from side effects to Medication , side effects to reduced activity or can have another Joint or Nerve Issue , or Vitamin or Mineral Imbalance from being rundown from coping with PMR physically, which is more common to hands or feet which is being made more noticeable because of weakness caused by PMR.

Having uncommon symptoms to PMR or Pred Use doesn't mean you don't have PMR , your diagnosis shouldn't change because of new symptoms. If Doctors get into the habit of thinking like this they get to the point that they can't properly diagnose anything . And half of them seem to have enough difficulty doing that already.

When you next see the GP , politely point this out .

Take Care x

Bunny2 profile image
Bunny2 in reply toBlearyeyed

I'm just starting tests to be diagnosed. Pain in shoulders, neck, hips, pelvis, ankles, and inner knees, pain and neuropathy both feet and lower legs and both hands, weakness and difficulty gripping, I drop stuff. What does GCA stand for? I know what PMR stand for.

PMRpro profile image
PMRproAmbassador in reply toBunny2

Giant Cell Arteritis - big sibling of PMR.

OutdoorsyGal profile image
OutdoorsyGal in reply toPMRpro

When I asked my MD (Internal Medicine specialist) about my risk for GCA, she corrected the term to her preferred term: Temporal Arteritis. Two names for the same thing, apparently.

PMRpro profile image
PMRproAmbassador in reply toOutdoorsyGal

Nothing like showing just how out-of-date she is!!! It was thought that GCA only affected the temporal artery and could be seen there. GVA can affect other arteries in the head and also in the truck, including the aorta.

OutdoorsyGal profile image
OutdoorsyGal in reply toPMRpro

We were talking about the risk of blindness, so maybe TA is a subset of GCA.

(At least she didn’t say “What is GCA?”)

Gary1310 profile image
Gary1310

My hands and feet swelled even before PMR diagnosed. Fingers like sausages. Then the flare. Feet started to feel numb years preceding PMR. Was diagnosed in January. Flared first week in December....almost 1 year. My feet are still a bit numb. I just ordered a Shiatsu foot massager. I hope it helps my feet,.....and walking. Swelling is mostly gone.

PMRpro profile image
PMRproAmbassador

I'm assuming you looked at your old post?

healthunlocked.com/pmrgcauk...

to save me writing it all again!

And this:

clinexprheumatol.org/articl...

comes from the Italian PMR expert to match Dasgupta the UK GCA expert. And he concludes with this paragraph:

"In summary, distal musculoskeletal manifestations are common in PMR. Peripheral synovitis is most frequent, but distal symptoms of diverse types such as carpal tunnel syndrome, isolated tenosynovitis and distal pitting edema often occur. Physicians need to be aware of these various manifestations in order to make a prompt and correct diagnosis and institute early the appropriate therapy."

Bunny2 profile image
Bunny2 in reply toPMRpro

What does GCA stand for. I'm just beginning to try to be diagnosed. I hurt, swell, everywhere.

PMRpro profile image
PMRproAmbassador in reply toBunny2

Giant Cell Ateritis - PMR's big sibling that can affect the arteries in the head and the large arteries in the trunk. When it affects the head it causes symptoms there - and can lead to loss of vision so it is very important to keep vigilant for symptoms whn you have PMR which can be a symptom of GCA - but not always.

OutdoorsyGal profile image
OutdoorsyGal in reply toPMRpro

GCA aka Temporal Arteritis

DianeA1 profile image
DianeA1

Yikes. My hands felt like the bones were broken.

PMRpro profile image
PMRproAmbassador in reply toDianeA1

Me too - couldn't shake hands without wincing

Constance13 profile image
Constance13 in reply toPMRpro

Ditto!

Rokerman profile image
Rokerman in reply toPMRpro

I’d forgotten that one PMRPro! Frequently have had to shake hands at site- meetings, often with the archetypal hairy-a***d builder...! Felt like a right wimp 🤣

Am now down to 1.25mg Pred per day and, since about 2.0mg, awake with painful finger joints. As we speak, am clutching hot mug of tea - helps a bit, gets a lot better by about midday.

PMRpro profile image
PMRproAmbassador in reply toRokerman

If 2mg stopped it - that's where I'd be!!!!

Rokerman profile image
Rokerman in reply toPMRpro

Oops - didn’t mean to sound smug! I’ve drawn out what I hope is the final taper, over several months now, maybe down to 1.0mg at Christmas. The last bit is going to require a leap of faith, though?!

PMRpro profile image
PMRproAmbassador in reply toRokerman

You didn't sound smug - just possibly in a touch of denial????

DDKRM profile image
DDKRM in reply toPMRpro

I thought this was just an arthritis symptom.

cmgarner profile image
cmgarner

Before the actual diagnosis of PMR, my wrists, hands and fingers were so very painful, and useless for gripping anything. I got caught in my bathroom several times, unable to turn the door knob to get out, home alone. Even wrapping a towel around the knob didn’t help much because I had no grip strength. Changed the round door knobs to the lever style.

Pain also radiated down the backs of my buttocks and thighs. Then it showed up on the inside of my knee joints and felt like severe cat scratches.

When I started on PMR dose of 10 mg prednisone, these symptoms disappeared quickly, but I didn’t recover the range of motion in my knees. GCA occurred 5 weeks later, and prednisone increased to 60 mg. It’s now been 5 weeks on 60 mg and I’m getting the range of motion back to normal.

PMRpro profile image
PMRproAmbassador in reply tocmgarner

We moved temporarily to a house with round knobs - I only ever choose levers. First time I went to the loo I was stuck for ages! The snib for the round knob was removed pdq and a hook put on to lock it. Think I used a damp towel to get a grip on it. I still have a thing about locking doors if I'm in the house on my own!!!

Portobello profile image
Portobello

PMR diagnosed & finally started Pred on Aug 1st. Now on 11mg and yes, my hands ache and make a cracking sound. So do my ankles and sometimes my feet, so you're not alone. 😟

Hellyowl profile image
Hellyowl

My hands and feet became swollen and stiff from pred. When I was immediately diagnosed with GCA it was the pred. The swelling has gradually gone down with pred reduction. Shoe size back to normal and rings on. But I have arthritis in my hands. I recently had reflexology for lymphatic drainage. It has taken the morning stiffness from my feet and my legs feel much better

Purplecrow profile image
Purplecrow in reply toHellyowl

I have arthritis in hands and wrists. Weather changes cause lots of discomfort. Also, I find I am hyper sensitive to salt. Need to restrict it or I have puffy hands in the morning.

All new since onset of PMR and Prednisone.

Jerri, PMR diagnosed 2013.

Hellyowl profile image
Hellyowl in reply toPurplecrow

I haven't added salt to food for about forty years. We get plenty in bought food. I think that helped me when I was on big doses of Pred in the beginning.

polymy profile image
polymy

I have always had pain in my hands as well as the other pmr symptoms. I get the same response as you when I mention it to the consultant. Mind you, fair dos, she had my hands ultra sound scanned for RA but didn’t accept it as part of PMR.

I have pain in my hands, not enough to complain about but my previous Rheumatologist always checked my hands, as does my current one & the Rheumatology Nurse. I know they are probably checking for LORA (late onset Rheumatoid Arthritis) l do have have the Rheumatoid Factor.

I had a Rheumatologist back in the beginning who always wanted to know every little detail, ache or pain, l think he was on a mission to try to get to the bottom of it......

stellafmdm profile image
stellafmdm in reply to

It’s my wrists that hurt these days, shaking hands is not on for me!

Noosat profile image
Noosat

In the beginning of my PMR journey, I had pain in hands. No at 4mg of prednisone and a year later that pain is gone. However, once in a while when in bed reading, one hand will start to cramp.

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