Carpel tunnel

[Dorsetgirl17]

Recently diagnosed with pmr. My fingers pre Pred ballooned like sausages and hands and wrists very painful. All that has gone but having had it before when I broke a wrist in the past, I can feel a slight carpel tunnel tingle coming into both hands, anybody else ever had this?

[PMRpro Ambassador]

Carpel tunnel syndrome can be associated with PMR and so can RS3PE syndrome - which is what the pre-pred effects were probably due to since they went on pred.

[Dorsetgirl17 in reply to PMRpro]

Thank you for your reply

[Blearyeyed]

Carpel Tunnel tingles can happen.

Try increasing your B vitamins , Omega 3 and Magnesium. And a Magnesium lotion can help too.

If you do feel it's getting in the way if Everyday Activity or getting worse do go to the GP to get it checked and discuss it in case you need further treatment for it separate from your PMR management.

[Dorsetgirl17 in reply to Blearyeyed]

Thank you for your reply

[RecentPMRdiag]

Hi Dorsetgirl17,

I also get symptoms like Carpal Tunnel syndrome with my PMR. I don't have the swelling/oedema etc associated with RS3PE, so GP had ruled that out. But I have the painful wrists, pins and needles and hand weakness - sometimes independently, sometimes all at the same time. My symptoms are sometimes just left hand and wrist, sometimes both, and they do not respond to Pred. dosing with my other symptoms - they last much longer after daily Pred dose, sometimes into the mid evening. These symptoms also only started after the main shoulder/upper arm/pelvis & leg symptoms were being brought under control by the Pred.

I initially thought I was doing something like sleeping on my arms at night after the Pred eased by shoulder and upper arm issues and allowed me to roll onto my side in bed. However after trying to stay on my back with straight arms I ruled this out.

As I have learnt about Pred dosing and what is meant by my own level of PMR symptom 'control' through the Pred tapering I have come to use the wrist and hand issues as my lead indicator of being 'on the edge' for other symptoms, i.e. they are the last to disappear and first to appear again if i'm pushing it too much. i.e. if I don't have any wrist hand issues for a couple of days I think I am ready to drop down a level on the taper, if they reappear I step back for 1 or 2 days a la DSNS tapering technique.

There are some practical issues I have to work around - especially opening packets/bottles in the morning - so i tend to open the meds etc. the night before just in case. This has led me to become a real fan of Bircher Muesli as I can make it the night before and minimising pfaff for eating whilst taking my morning Pred.

My GP and Rheumatologist had initially told me that PMR did not include asymmetric or 'distal' symptoms - help from this forum and reading more widely has helped me understand that many people (Dasgupta et al says 15% of PMR cases) do get 'Distal findings also referable to carpal tunnel syndromes, secondary to wrist involvement'.

So my experience is slightly different - but I suspect all part of the 'clinical spectrum of PMR'.

[PMRpro Ambassador in reply to RecentPMRdiag]

Given that all rheumies do a similar training - how come they don't get the info that we have? I've read the papers, I know my distal symptoms are "approved" by senior figures in the field. So why don't they?

[Dorsetgirl17]

When I broke my wrist and carpel tunnel came on couple of months later was given a wrist splint, I wear this nighttime to keep the wrist straight allowing blood to get to fingers, it does seem to be making a difference. Thanks for your comment

[RecentPMRdiag]

Hi PMRPro,

Such a profound question. It goes to the heart of both the educational backgrounds of our medics and also, in my estimate, 50+% of the postings on this forum!

You have, of course, partially answered your own question; i.e. clearly the conventional medical training is not been updated to include the research and developments to which we have ready access. One suspects the rationale for this inertia is due to more human factors in the medical profession rather than a lack of a 'scientific' evidence base of our symptoms.

The following are areas where I think the medical profession’s ‘philosophy of procedure’ struggles, causing a lack of medical confidence for all but the best of the profession:

•Lack of an orthodox understanding of what triggers our immune systems to beget PMR or GCA

•The inconveniently broad spectrum of mainly subjective symptoms that characterise our diseases e.g. not determined by blood test results

•The significant overlaps with alternative diagnoses for many of our symptoms

•There is no ‘cure’ – an existential challenge for a naïvely medic schooled with a ‘fix it’ mentality (I chose my words here carefully).

Whilst we all know some medics who are content to admit that ‘we don’t know’, most seem able to ignore many of the inconvenient phenomena that patients present and continue to trot out statements that we can refute. For example my Rheumatologist has twice told me that I should expect to be on Pred for one year, to which I paraphrase your statement that the median duration for Pred treatment was 5.9yrs. Similarly last Friday a Dr in my local hospital pressed me to confirm that my Rheumatologist had made a ‘definitive diagnosis of PMR’, to which I responded that I was not aware of any definitive diagnosis for PMR and quoted by Rheumatologist as making a ‘fairly firm diagnosis’.

Here we can take heart from two facts – first, we seem to be collecting contacts with medics who give us confidence; secondly this forum must be an excellent example of patient empowerment such that we can change the level of involvement and therefore the balance of power between the patients and the medics in our diagnoses and treatments, e.g. I helped my GP through many of my potential differential diagnoses using information from this forum, which in my opinion has led to better, faster treatment.

More power to this forum - and let's encourage our medics to join!

[PMRpro Ambassador in reply to RecentPMRdiag]

Absolutely. I have commented before on the fact that so many rheumies seem disinterested or depressed - medics are brought up in an expectation they will rise to the rescue and cure but in this field there are not so many options for cure. And they often don't like to be "merely" managing symptoms in the best way possible which is what the patient needs while waiting for natural remission. A cure would be the cherry on the top - but in the meantime, as with palliative medicine, we need to live well with what we are dealt.

[Dorsetgirl17]

Yes, I believe you are quite correct