I am a fraud: A few weeks before Christmas 2019,... - PMRGCAuk

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I am a fraud

Legsy0714 profile image
69 Replies

A few weeks before Christmas 2019, 2 days on the run I had walked the stiff 5 miles from the local town to home though the second day I I felt far wearier then I should have done.

The next morning I couldn't bend to put on my socks so excruciating was the pain at the tops of my inside thighs both sides.

A week later, my first GP insisted it was a sports injury. I said 'I've been playing sport since I could walk; this is not a sports injury". "oh well I'll give you some anti-anti-inflammatories then" "no thanks".

A week later, fortunately, I saw a different GP who tested my hips and thought they were ok (I do have lovely hips) so she arranged blood tests. When I went back to discuss results she diagnosed "with 99% certainty" pmr, especially as my hips X-ray showed they were in good condition.

She gave me a prescription for normal pred 20 mg per day. As it was evening I took half a dose and blissfully the pain had subsided before bedtime.

I was ecstatic. I I had my life back, which has ever featured sport and exercise.

I am 76 male 6 ft 2 and when diagnosed 13 stone 9 lbs

I devoured loads of info from the internet so as to be both aware and prepared. I took the decision I wasn't going to lie down but I was going to maintain an exercise regime to or just beyond my tolerance boundary.

So I got into the habit of walking a mile and a half or 2 Into the woods, collecting a couple of logs for the open fire, hefting them home then doing 20 minutes on the water rower while I was warmed up.

3 weeks ago the woods took their revenge I leaned on a rotten branch about to saw a log, the branch broke I I pitched forward and tore muscle in my buttock.

I covered the mile home foot by foot. I recovered quicker than expected (maybe the steroids helped) and this weekend I bought a second-hand bike from a deserving local charity and for the last 3 days I've cycled 8 to 10 miles then water rowed 15 or 20 minutes. I'm definitely not what I used to be (I've had to get off and walk up some Hills I should have managed ) but for everyday tasks my energy levels are fine.

I'm down to 12.5 milligrams and this morning I'm 13 stone 4

I'm hoping this doesn't sound cocky or boastful - I'm just hoping 2 give you pause and cause for thought as i have been so lucky.

Thanks to everybody for all the helpful posts which have been a godsend to me. I think I'll give my first GP the website address!

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Legsy0714 profile image
Legsy0714
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69 Replies
SheffieldJane profile image
SheffieldJane

I think your regime for managing our condition is commendable. A good level of physical fitness as a background has to help everything. You will be avoiding muscular weakness that comes alongside steroid use. Self care does mean pacing yourself and listening to your body. If it ain’t broke, don’t fix it. We are unique in our response to autoimmune disease and what you do will be impossible for a number of us though.

Legsy0714 profile image
Legsy0714 in reply toSheffieldJane

Good points taken on board Jane.

Sorry to hear you have the old PMR please, please be mindful that Pred only dampens down the inflammatory symptoms but the real issues chug along in the background, so take it steady.

Wishing you all the best with your regime & it’s great you can maintain your fitness.

Best Wishes 🍀

MrsN

Legsy0714 profile image
Legsy0714 in reply to

Thanks Mrs n. Like you, I do try to listen to my body

PMRpro profile image
PMRproAmbassador

I could take being that sort of fraud!!!!

Telian profile image
Telian in reply toPMRpro

Me too!

MargaritaRose profile image
MargaritaRose

Thank you...that is enciouraging

fmkkm profile image
fmkkm

Yes, this is an amazing forum, I am blessed to have found it. I also have maintained an exercise habit, I walk 5 miles a day and lift a few weights. The first month I was diagnosed I ordered a book on eating and autoimmune. I have lost 10 pounds. I do think it has all helped but I still have to remember there is something flaming in me and stay chill with life.

Sadly, I do not have “lovely hips”😂

All the best to you on this journey! fm

Legsy0714 profile image
Legsy0714 in reply tofmkkm

Well done FM. Outstanding efforts. What does your diet consist of? I confess to being a carnivore.

yogabonnie profile image
yogabonnie

the book says to eat greens and veggies right_? this isn't some new and wonderful eat cookies book is it? haha!

fmkkm profile image
fmkkm in reply toyogabonnie

Dream on! I wish there was a “cookie diet”,

I would buy that book! Write it Bonnie, you will make a lot of money 😉

Grants148 profile image
Grants148

Well it makes me feel exhausted reading about all your physical activity,well done for not giving in to PMR .The GP trying to pass your pain off as a sports injury is unfortunately just what a GPtold my husband when he had bad shoulder pain,a pulled muscle !He should have sent him to A&E,he struggled on pain killers for a week,went back again to GP,again he said it was a pulled muscle.,by that time my husband had suffered a major heart attack and still the GP did not realise ,by the time he finally went to A&E his heart was badly damaged.It is sometimes best to work things out ourselves,after all we are the ones who know exactly how we feel,especially when tapering the pred,it is not always much help when a GP tells us to lower the dose too quickly.l did ask my husband ,could it be your heart? but he believed the GP was right.I hope you continue to enjoy your outdoor activities,half an hour gardening is enough for me !

Legsy0714 profile image
Legsy0714 in reply toGrants148

Thanks Grants. So sorry for your husband's probably avoidable heart attack and hope he's asfit as possible in your loving care. Thanks for kind comments. The best to you.

teesher profile image
teesher

Walking into the woods, collecting logs and hefting them home for the fire. Sounds like you live on a Disney set. You are doing great and pmr seems to affect men differently to women. Don't be too tough on yourself though with the exercise. Pmr can rear up when you least expect it. :-)

Legsy0714 profile image
Legsy0714 in reply toteesher

Wise words thanks Teesher

Legsy0714 profile image
Legsy0714 in reply toLegsy0714

Hope you are doing well too

Legsy0714 profile image
Legsy0714 in reply toteesher

It is a lovely spot overlooking firth of forth.

PMRpro profile image
PMRproAmbassador in reply toLegsy0714

In the Kingdom or the other side?

Legsy0714 profile image
Legsy0714 in reply toPMRpro

Hahaha. Nr s Queensferry. You too?

Legsy0714 profile image
Legsy0714 in reply toLegsy0714

Only been here a year

PMRpro profile image
PMRproAmbassador in reply toLegsy0714

No, I live in northern Italy but my daughter is the other end of the bridges in Rosyth :)

Legsy0714 profile image
Legsy0714 in reply toPMRpro

Aha! I can look out of my window and see her!

PMRCanada profile image
PMRCanada in reply toteesher

Yes, I have noted that men seem to fair better than women with PMR, especially with physical fitness and tapering. Hmmmmm.

Legsy0714 profile image
Legsy0714 in reply toPMRCanada

Ok but hardly worth transgendering ☺️ hope that's not offensive

PMRCanada profile image
PMRCanada in reply toLegsy0714

No offence taken at all...and I work in the sexuality field! 🤣🤣🤣

Legsy0714 profile image
Legsy0714 in reply toPMRCanada

Such a relief 😂

teesher profile image
teesher

Sounds lovely.

GOOD_GRIEF profile image
GOOD_GRIEF

Just a couple of precautionary comments:

Pred makes us very vulnerable to tendon and muscular injury, and it can happen just making the bed, lifting a pitcher of water, or bending over to pick something up from the floor. Therefore, we should always be prepared to handle such events.

If you're hiking or biking alone, make sure you have a charged cell phone, and restrict yourself to areas where there is reliable service. Then you can call for help instead of trying to tromp through the woods with a torn butt muscle for miles and miles, potentially worsening the injury.

If you're going along with someone else, make sure you are the pace setter. This is no time for competitive events. You can challenge yourself, but don't rise to the challenge of someone else.

Keep on keeping on, but be wise.

Legsy0714 profile image
Legsy0714 in reply toGOOD_GRIEF

Thanks a lot GG. I was not aware of the increased susceptibility to injuries. I do find I am cramping easily. Is this common?

YuliK profile image
YuliK in reply toLegsy0714

Yes. I suffer leg cramps since pmr.

Keep up your good work and don't over do it.

YuliK ..76

Started pred 25mg

Today 7mg

Legsy0714 profile image
Legsy0714 in reply toYuliK

Thanks yulik. Wilco 😊

PMRpro profile image
PMRproAmbassador in reply toLegsy0714

Pred makes us lose more magnesium (and other ions) through the kidneys and low magnesium can be the cause of cramps. Try magnesium supplements - but don't overdo it as they can have a laxative effect.

EdithWales profile image
EdithWales in reply toPMRpro

I have been struggling to maintain magnesium levels for ages and have had a variety of different sorts as they produce the side effects you mention. My Rheumatologist said to try Magnesium Glycerophosphate

mag 97.2mg 4 mmol Apparently that’s what the Gastroenterologists recommend. It works for me and I don’t have any side effects.🥂🥂

PMRpro profile image
PMRproAmbassador in reply toEdithWales

That's useful - is it easy to get?

There is always the option of Epsom salts in the bath/foot baths and magnesium spray too.

prunus profile image
prunus in reply toPMRpro

I get pure magnesium tablets from the Pharmacy. I originally bought them to help my migraine with aura. Did not realise their other effects. Thanks for that.

Legsy0714 profile image
Legsy0714 in reply toEdithWales

Thanks both for helpful info.will try.

PMRCanada profile image
PMRCanada in reply toEdithWales

My daughter who is a nutritionist got me two products I mix with low sugar orange juice before I exercise. They are called MAGsmart and Natural Calm (magnesium citrate powder). So far so good!

EdithWales profile image
EdithWales in reply toPMRCanada

I will see if they are available in the UK

🥂🥂

Casia profile image
Casia in reply toGOOD_GRIEF

Good advice from Good_Grief. Sometimes it’s hard not to over exert if you’re in a class such as Pilates as others are more flexible and stronger but if you’ve a good teacher who is aware of your condition, you should feel confident enough to go at your own pace. It’s important not to compete with others.

Casia profile image
Casia

Well done ! I thought you’d like to hear that since I’ve had PMR (2.5 year) I’ve learned how to do front crawl and yesterday I did 40 mins swimming followed by a Pilates class then I cycled to my localtown centre. I’m on 3 mg of pred. I got to 2.5 mg before I was ready and had to go back up to 3.5 mg . I do have to be careful I don’t overuse my muscles which can be a challenge but feel so much better especially after swimming. Good luck with your progress!

Legsy0714 profile image
Legsy0714 in reply toCasia

That's brilliant Casia! Yes I do like to hear it. All of it especially the tapering success . Inspirational.

Pym1 profile image
Pym1

I know what you mean! Since I was diagnosed 18 months ago I’ve been quite good at doing exercises (squats, planks, sit ups etc) every day. Cycle about 25 miles twice a week. Have taken up yoga, which helps. Some days are better than others and muscles just don’t want to play ball, but I’ve found pushing through worth it, slowing down, resting more and lots of stretching.

Still had a good season’S skiing, but can’t do all day every day like I used to (I’m 73).

Take it easy. There’s a temptation to think you’ve got it cracked and then get fed up when you realise you haven’t. Got down to 5mg per day about 2 months ago, but couldn’t cope. Doc put me back to 12.5 and I’m now on 7 but 6 it’s becoming a challenge.

When I look at what problems others seem to have I, like you, feel a fraud until I wake up and am reminded I’ve still got it as soon as I get out of bed.

My wife and children worry about me cycling and skiing alone, so I usually find a companion. I take a phone always and make sure my ICE details are up to date.

I also wear a Medicare bracelet.

Keep up the good work 👍🏻

Legsy0714 profile image
Legsy0714 in reply toPym1

Inspirational approach thanks Pym. You are a flag bearer! You are so right. The body gives us messages. I will take notice of it and of your advice. Thank you.

survivalist profile image
survivalist

I'm really glad your OK . I don't want to be a spoil sport but you should definitely listen to this carefully.

I'm very very similar to you ie a 6ft 2inch male. Another total indestructible Rambo as in professionally qualified mountaineering instructor, climbing rate above 1000 ft in 15 min and extreme rock climber. I have diced with dead more times than I can remember.

If you read some of my first posts you can even read the same feeling I had about PMR as you have.

I don t care if this sounds bossy. Be careful don't push it too far, back off a little bit your 76 years old.

I am 65 years old and my PMR went to GCA just be careful. I'm not saying what your doing will make this happen but easing off a little bit especially if you feel any pain anywhere will do no harm.

Legsy0714 profile image
Legsy0714 in reply tosurvivalist

Wow. Your history Survivalist entitles you and your advice to max respect. The ultimate man v Nature challenge - climbing.

I will heed thanks and I wish you stable condition and long life.

Pym1 profile image
Pym1 in reply tosurvivalist

Thanks for this warning, im sure it applies to both Leggsy and me. These days I’m happy to walk up 1000’ an hour!! I’ll think of you next week when I’m skiing under the Eigernordwand. ⛷

whitefishbay profile image
whitefishbay

I wish I did do that much exercise. Impressive.

Legsy0714 profile image
Legsy0714 in reply towhitefishbay

I don't know your condition WFB but little steps..... I am lucky as a lifelong sportsman. Wish you the best

whitefishbay profile image
whitefishbay

I am busy but pretty lazy and have bad feet (extensor tendonitis) so first thing I walk like Frankenstein. Motion is lotion. Got to keep moving. Thanks and keep going.

Legsy0714 profile image
Legsy0714 in reply towhitefishbay

Good on you. Have you thought about a pedal machine worked by your hands? Squeeze grips for hand strength? Low weights for round wrists or ankles (leg raises from sitting)? Cycle/rowing machines? Or simple things in house - step ups on bottom stair, using food cans (full!) As weights to raise and lower eg

Noosat profile image
Noosat

First, I am 91 years old as of last January 17th. Have always been very active, competitive runner, tennis hiking etc. Diagnosed with PMR last December. I had thought symptoms earlier were due to age. Have gone from 20mg to 6mg. I set myself levels of improvement. Exercise is very important. I have finally touched my toes again while in hot shower. Yesterday walked for 35 minutes along river at good pace over grass, pebbles and uneven dirt. I celebrate each small achievement, glass of wine with dinner. I have a goal. I used to travel overseas at least once a year. To do that again, I want to be able to walk at least 3 miles without stopping. Your story encourages me.

in reply toNoosat

Wow! Well Done 👍🏼

Legsy0714 profile image
Legsy0714 in reply toNoosat

Bloody hell. Your story gobsmacks me 😱so where will you go on hols? Wonderful walks on miles and miles of empty beaches on Portugal's Atlantic coast. I did the Camino along it. Fabulous.

Jackoh profile image
Jackoh in reply toNoosat

As the younger ones say- “respect!!👍😃x

Dunkel profile image
Dunkel in reply toNoosat

That sounds so fantastic! Life with PMR ispossible, normal?? The exercises in whatever form are absolutely necessary, my question still

is, only with Prednisone? I hear different reports,

opinions, believes on this, you people here seem

to be Okay with this medication, my Dr said one

year on this stuff, not more, in Europe, they also

want you to be off steroids, what is your opinion

and outcome? What else to take? or manage without if you can???

PMRpro profile image
PMRproAmbassador in reply toDunkel

Depends on you and your PMR - I've had it for 15 years and been on pred for 11 of them. I haven't fallen apart, have no identifiable adverse effects and live a reasonable life. But 1 year is enough for maybe 1 in 5 patients - is he going to leave everyone else in pain, disabled and unhappy?

Dunkel profile image
Dunkel in reply toPMRpro

Well, this is exactly my question, who knows how I will react, if not my Doctor, or I have to find out by trail and error ? Or look at all your people life’s with what dosis you manage, long-standing or short lived and back to the higher level of Prednisone and

hope to have the same success ( more or less) with good luck what you have.

A lot of positive wishes, and now to hear

more conflicting “opinions “by specialized Doctors, what is best, low

dosis or nothing, is more confusing.

Thanks for your site, at least, there are so many different outcomes, that I take the

courage to try myself another combination,

probably somebody tried this before??

It’s great to hear about successful outcomes,

In life’s with PMR, in whatever form, it’s a struggle in the unknown, we need a better medication, and a better support by the leading Rheumatologist association, maybe

you have better access to this??

Thanks very much for your reply.

PMRpro profile image
PMRproAmbassador in reply toDunkel

Bear in mind your doctor is working on the theory he has learned at med school. And it is not often a fit to reality. There are good rheumies in the field - I suppose mine is one of them.

Dunkel profile image
Dunkel in reply toPMRpro

You are so right pro,Several Doctors (family!) advice me to get off Prednisone, I tried!

Felt good with 3mg,(down from 20mg)

so I stopped taking it.... for 10 days and day 11 I had to take 3mg again ( hopefully it will

be enough) and happy it works!

PMRpro profile image
PMRproAmbassador in reply toDunkel

It is interesting that the few former GPs who have joined the forums when they developed PMR have without exception half apologised for how they had treated their patients with PMR!!

Noosat profile image
Noosat in reply toDunkel

After 2 years of careful tapering, I am down to 2.5mg. Had hoped to go lower during the last 2 months, however, I am having my aortic heart valve repaired on Thursday, so am being cautious. I hope you are doing well. Listen to the Moderators on this site ! :)

PMRCanada profile image
PMRCanada

Thanks for posting your successes and challenges. So nice to hear that you’re getting along well and are able to continue physical activity. Others have written helpful responses regarding being mindful to pace activity and the risk of tearing tendons, etc. I’ve thrown in a few comments too.

I manage deep water exercises in the pool a couple times a week, but alas my walking is limited as I await knee replacement surgery, but with knee injections I’m afforded more mobility.

I also changed my diet and lost 30 pounds without totally eliminating any of the major food groups (low carbs, sugar, salt), and I remain a carnivore (bbq steak is my favourite).

Keep up the great work and wishing you a continued smooth ride!

Noosat profile image
Noosat in reply toPMRCanada

When it becomes warmer I can exercise in the pool at my son, Leslie, and his wife, Emily Jade, home. Just 15 minute drive from my house. I am trying to be careful. To-day sun shining and warm, making it very tempting to go walking. Instead I have had my hair cut, bought a house warming gift and plan to do "stuff" around the house and prune some bushes. Thanks for the good wishes, :)

Legsy0714 profile image
Legsy0714 in reply toPMRCanada

Lost 30lbs! Without being able to do the major calory burners. Top marks PMRC

PMRCanada profile image
PMRCanada in reply toLegsy0714

Thanks! AND while on pred. The next 15 may be a bit more difficult to lose.

Legsy0714 profile image
Legsy0714 in reply toPMRCanada

You'll get there!

artfingers profile image
artfingers

Legsy that is impressive and inspiring, as are the other stories above. It encourages me! I remember how despairing I was before I even knew I had PMR as I could barely climb anymore and that was so depressing as I am in heaven when I reach the top of a mountain in Maine/New Hampshire where I go every summer. I was in tears when I first couldn't do it. Last summer it took forever, but I still reached the summit and that was my goal. So yes, staying as physically active as possible is my drive too. I'm 67 and just rode the stationary bike (no resistance which felt wierd) the day after hip surgery (doctor's orders). Today my doctor said I need to continue to follow her protocol and NOT push it (my tendency) so my hip (gluteous medius repair and bursectomy) will heal. Slow go that!

Legsy0714 profile image
Legsy0714 in reply toartfingers

Thanks Arty. Your obvious drive and determination will see you through. Delighted the thread has lifted people as inspiring stories have emerged, especially 91years young Noosat!

Legsy0714 profile image
Legsy0714 in reply toartfingers

Wishing you a smooth and swift rehabilitation!

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