STRESS INJURIES R/T PRED: Anyone else suffer from... - PMRGCAuk

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STRESS INJURIES R/T PRED

SMH4CRNA profile image
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Anyone else suffer from muscle stress injuries while on prednisone. Currently chair bound related to right leg IT-Band syndrome. Never had it before. Didnt do anything to strenuous to cause it. Road a stationary bike a couple times in the past 2 weeks. Now, cannot stand for more than 30 seconds until the pain drives me back to the bed. Been like this for 3 days. I read prednisone can cause strain on tendons and ligaments. I can imagine the healing process is slowed. Never had these kind of issues before.

Status update: 14mg prednisone. Started taper this week. Rheumatologist did not seem concerned by elevated CRP/ESR. See my last post. Thank you for support.

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SMH4CRNA
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PMRpro profile image
PMRproAmbassador

You rode a stationary bike - for how long, at what intensity? Even if it was less than you used to do - it was still possibly more than you should have.

It isn't just the pred that is a risk factor. PMR involves inflammation of the soft tissue structures around the joints - muscles, tendons and ligaments and their attachments. The pred has cured nothing - it is mopping up the inflammation to reduce symptoms but the underlying autoimmune disease is no less active in these early stages and it continues to attack the body and cause problems.

You have a new normal - and you are best to adjust to that by starting at a much lower level of activity than immediately pre-PMR and retraining from a low level to identify where your new normal is.

We know we sound boring, over-cautious, a load of old women - but once it has happened, you have to recover and that can take longer than usual and in the meantime you have lost even more fitness. We say all this as the result of many patient years of experience - in the hope of saving others from making the mistakes we learned from.

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

Yes Mam, I rode the bike for 20 minutes 3x in a week recently. Prior to dx I rode the bike 4-5 times a week. Rode through the PMR stiffness and pain. This caused the initial injury. Most recent bike exercise agitated the injury, but now on prednisone the symptoms were debilitating. Never felt pain like that in my life.

Reading the PMR and GCA survivors guide. Giving me a new perspective on my life. Guess I've been in denial. Time to take control of my life and follow direction. A male, young for the disease and add type A personality does not go well with being humble. This disease is humbling for sure.

I will say, most recently when people on here were doubting I had PMR put doubt in my head and pushed me away from this forum. Needless to say, I did not feel supported. Trust me, I don't want this. I had all the classic signs for this disease despite my age. The book even mentions carpal tunnel. I had bilateral carpal tunnel surgery in 2020 and 2021. I had intermittent fevers. I had/have raised inflammatory markers. Had all the physical symptoms defined in the literature. I responded to prednisone per text book. So, when people on here say I don't have it what makes them the expert in relation to me. I said NSAIDs helped, but did not cure. I am here for support, and if I'm not part of the group than let me know. I can go elsewhere.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

You get support here - but not always a blanket "of course it is PMR" response because there ARE other things that are probably more likely overall and that is what you will meet from the vast majority of rheumies unfortunately. Many of us have been there so do tend to offer other possibilities - no-one can diagnose online so bringing the other options into the discussion does make sense because even with absolutely textbook PMR symptoms and doing well initially on pred really doesn't rule out some of the other options.

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

Than I will keep an open mind to other possibilities naturally. Although, this is what I got according to two different Rheumatologist. I will act as if, and follow the guidance provided until proven otherwise. I can only hope to be proven otherwise with a favorable outcome.

Kendrew profile image
Kendrew in reply to SMH4CRNA

Hi there,

Firstly I want to say how sorry I am that you feel so upset and I'm sorry you don't feel supported here.

I can only speak from my own experience and tell you that I was diagnosed with PMR in May 2019. One of the first things I understood was just how challenging and difficult this disease can be to diagnose. It mimics so many other possible conditions, and therefore it's important to exhaust all other possibilities first to avoid needlessly taking steroids.

Most of us who've been on here a while now know that one of the few defining characteristics of it though, is that the pain and stiffness of PMR does not significantly respond to any medication other than steroids. If regular painkillers ease the symptoms then it's most likely not PMR.

The steroids don't cure PMR, they merely reduce the inflammation in the body, so the condition is still ever present, which is why over exertion (however small) can result in both an inflammatory 'flare' but also damage or pain caused as a result of overworking any specific set of muscle groups.

Long term steroid use can also lead to muscle wastage & weakness and a heightened susceptibility to injury or strains. Healing will also take longer as I've discovered for myself.

I'm saddened that you feel let down by this forum as the people on here are genuinely knowledgeable, trustworthy and only want to do their best to help us all make better choices. Their advice helps us to educate ourselves about PMR/GCA and the more we know the more effectively we can 'manage' the condition. Likewise, the more we know about you, the more we can help you....but sometimes that may involve asking quite a lot of questions.

Please know that you're welcome here and if you need support and advice, it's available to you as it's always been for me.

SMH4CRNA profile image
SMH4CRNA in reply to Kendrew

Thank you.

Agree NSAIDS in my case did not seem relieve the symptoms. Prednisone only seemed to work. The first 24 hours on prednisone felt great after a year of symptoms.

To understand me further, fortunately for me these symptoms seemed to arise during optimal time in my life. I most recently retired from the military. In preparation for retirement I went through a comprehensive medical workup. I was worked up for differentials prior to be diagnosed with PMR on top of the general medical retirement workup. Spent a year seeing general practitioners, internal med, gastrologist, hematology and rheumatology. During this time went through cancer screenings, CT, MRI, PET and the labs to run the gamet. Being a medical provider myself I understood the course of action and the need to find a differential dx prior to concluding on PMR. I also understand PMR continues to be a working dx until proven otherwise.

I will take responsibility for my sensitivity and be tolerant in the fact everyone is truly trying to assist. Just came off the wrong way, that's all. Please see previous post for ununderstanding. I truly do appreciate everyone and in general feel very supportive to all those here. Yet again, if it was not for the group i would truly be lost, so I thank you.

Kendrew profile image
Kendrew in reply to SMH4CRNA

That's perfectly understandable and you've clearly been dealing with a lot. No harm done.Onwards and upwards. 🙂

singingloud profile image
singingloud in reply to SMH4CRNA

As a medical provider in the service you probably didn’t experience too many patients with your autoimmune disease. I’m sorry to hear it took a year to get your dx. You will find others on this forum who are also under the age of 60 with PMR.

Rest well and give yourself time to heal. We are here for you.

Anonnomus profile image
Anonnomus in reply to SMH4CRNA

I am new to the group, so can't speak to level of support. But on the muscle wastage, and limiting effort, and attendant fatigue, I can offer some experience. I have always been a fairly active person, playing sports, working out. Lots of energy. My issue started with carpal tunnel, and I initially thought pmr symptoms were a result of inflammation caused by changes brought about by carpal tunnel. My shoulders and hips were the major problems, and my hands too from carpal tunnel release surgery. Pain got so bad I approached my GP for pain relief meds. I was already using ibuprofen 400 mg several times a day with very limited help. GP listened and immediately diagnosed pmr. Did blood tests to confirm.

Started on 20 mg, and got instant relief. Unfortunately blood pressure went through the roof. Lisinopril seems to have it under control. So, I thought I could resume playing softball and going to the gym. Obviously with limits on my activity. 9 innings of just umpiring for my team resulted in me being exhausted for two days. To fight wastage, I went to gym one day last week, and it felt pretty good. But when I tried this week, it wiped me out. And that's with very light weights. I have seen my body fat climb from mid 20's to low 30's in two months. Feel tired, and take a lot of naps, which seem to help.

So, yes, fatigue and muscle wastage are real. Sorry to hear that it has hit you at an early age. Let's both hope that we can work on minimizing the wastage, and fight this disease one day at a time. Prednisone has been a god send to me. Appointment with rheumatologist June 7 to seek tapering direction, which my GP will monitor. Best of luck.

SMH4CRNA profile image
SMH4CRNA in reply to Anonnomus

Thank you. Never related my carpal tunnel with the PMR until after the DX. Best of luck with your journey.

Viv54 profile image
Viv54 in reply to Kendrew

Well said Kendrew🌷

Exflex profile image
Exflex in reply to Kendrew

Kendrew said: “over exertion (however small) can result in both an inflammatory 'flare' but also damage or pain caused as a result of overworking any specific set of muscle groups.”

I found out the hard way and was hospitalised. Just a kick-around with son in law and it was too much. I was in a lot of pain, never before experienced anything of its like. Doubling from 12.5 to 25mg under medical orders restored me by the following morning. Go easy when you have PMR and when your adrenal glands are on holiday.

Abcd123455 profile image
Abcd123455 in reply to SMH4CRNA

Hi, it’s really hard to be diagnosed with PMR as it goes impact your whole like and even harder sometimes to take on board suggestions as it means frequently having to slow down ( I speak from my own experience having been suffering a long time with no diagnosis and only 51 now). I don’t think anyone wants you to feel anything but welcome on this group.

Golf-1 profile image
Golf-1 in reply to PMRpro

Thank you for your simple and clear advice as to what is happening with my PMR. Before being recently diagnosed in March this year, I had never heard of PMR and had no idea of what it is and how it affects the body.I am now beginning to understand that there is no quick fix and that I am in it for the long haul, and whereas I thought my first dose of Pred had cured me overnight, this is not the case.

Once I sort out my "East from my West" !!!! I will be continually seeking advice from you "boring- over cautious - old women" as I realise there is a lot to learn.

Some immediate advice you might be able to give concerns my past 24 hours. I had a brisk 1 mile walk to the station yesterday lunchtime having firstly taken what I thought was my current dose 15mg of pred, this was 5 hours earlier than I normally take it, as I was out for the rest of the day not sure when I would next eat.

On returning home in the evening I discovered 5mg of pred in the sink so I had only taken 10mg earlier. Not knowing what to do, but knowing pred stops the pain, I took the 5mg straightaway without eating anything and went to bed.

Throughout the night I have been waking up about every half hour with cramp like tightness in both feet and lower calves, the only way to clear it was to get up and walk around for a few minutes.

Any comments and advice would be very welcome so that I can try to avoid this happening again

PMRpro profile image
PMRproAmbassador in reply to Golf-1

Could just have been the "brisk" walk was just a bit much for your muscles. Pred also makes you lose magnesium through the kidneys and low magnesium levels in the muscles commonly leads to muscle cramps, more noticeable at night. Trying a magnesium supplement might help - it is the first thing any GP here in German-speaking Europe will say to try before initiating more complex testing.

Why do you take your pred at that time - 5pm as I understand you? The more usual time is all as one dose in the early morning - for various reasons but the inflammatory substances that underlie the cause of the PMR symptoms are shed in the body at about 4am. The sooner after that happens that you take the pred, the less inflammation has developed and the less the pred must then do to improve things. The effect does last for 24 hours for many people, but not all. Having the boost of corticosteroid in the morning is also more like the natural production of cortisol in the body - the lowest level is between midnight and about 3am and that triggers the adrenal function to produce cortisol about the time you get up to cope with the day ahead. The later in the day you take your pred, the more is left in the body at midnight and the more effect it has on adrenal function and can also affect sleep.

By the way - it would be so helpful if you could add some details to your profile - like medical history and pred dose and management of PMR.

Golf-1 profile image
Golf-1 in reply to PMRpro

Thank you for your prompt reply and very useful information, I had not been told when to take pred only that I should take it with food. As I tend to have breakfast around lunchtime I decided with my evening meal would be best, obviously very wrong - routine changed as of now, back to breakfast first thing along with all medication.

I have looked into Magnesium Supplements and as you will know, there are various types and various strengths, also some warnings about not taking certain types of Magnesium. Are you able to suggest where I might start please, ie type and strength.

I will update my profile with my full medical history, but it is very short and simple. I snapped my Achilles 17 years ago, my first visit to hospital since having stiches in my leg over 50 years previous. I believe I had Covid19 in Feb/March 2020 before I knew what Covid19 was. I became very breathless when playing golf in summer 2021 and that continues to date.

Breathlessness became so bad by October 2021 I went to GP had blood tests, ecg and heart and lung x-rays, followed a few months later by Full Lung Function tests. All tests showed that there is no problem with my heart or lungs, however the initial blood tests did discover that I had high blood pressure so since October 2021 I have been taking 5mg of Amlodipine per day.

As Full Lung Function test showed no abnormality, GP arranged further blood test to investigate breathlessness in March 2022 and then discovered I had PMR. GP put me on 20mg Pred per day 16th March, had further blood tests 13th April, reduced my dose to 15mg on 10th May , I was 7 weeks on 20mg. 17th May told GP about pains in feet ankles and right hand, have had further blood test today to see if Pred dose working.

To work with the side effects of Pred I take 1 -20mg Omeprazole per day to protect my stomach and 1 - 70mg Alendronic Acid per week apparently to protect my bones

That is my medical history except that I am now an appreciative, and seemingly, lifelong Member of the PMR Club.

SMH4CRNA profile image
SMH4CRNA in reply to Golf-1

Ironically, I belive I had COVID back in Feb 2020. Fortunately, what I thought, had no on going issues. It followed with caring for COVID patients and leading testing and vaccination efforts. Multiple triggers that led me here.

As far as GI issues, I too had problems. When started on 20mg of pred I had bloatness and diarrhea 3-5x per day. I followed instruction by taking in AM with food, MOM and eventually started on Omeprazole. As soon as I started on the Omeprazole most of my GI symptoms disappeared. I am truly grateful for Omeprazole.

My biggest concern is hypertension and type 2 diabetes. I did find the PMR & GCA Survivors guide to be a good resource. Of course, all the wise and supportive members here on the forum.

Now, I just need to get off the couch with this IT-Band syndrome. This truly is debilitating. Good luck.

PMRpro profile image
PMRproAmbassador in reply to Golf-1

As far as magnesium is concerned - magnesium for cramps is magnesium - which salt it is is not so important, the specific salt may relate to other things. Some people develop very loose stools in response to magnesium supplements, Epsom salts was used for constipation, but the effect varies from person to person. It also depends what is affordable and available where you are - the magnesium salt I use here is only available in Italy and France as far as I can tell but is a lot more expensive than some other forms that really don't agree with me (I use it for cardiac arrythmia). Find one that suits you - as a supplement, as foot baths, as a spray/oil.

That 5mg reduction was a lot to do at a time - expert recommendation is that no reduction should be more than 10% of the current dose. Otherwise you risk missing the dose you need by overshooting - and your body may react quite strongly to the change in dose and it becomes confusing as to what is causing any aches and pains.

Bcol profile image
Bcol

Not heard of that before, beginning to wonder if that was my problem with my thigh, knee and shin pain. If so it took me around three weeks to get mobile ish again with walking stick.

Seacat30 profile image
Seacat30

Asked my physio this question and he said that he thought that taking pred might weaken the ligaments.

SMH4CRNA profile image
SMH4CRNA in reply to Seacat30

I just know I had the injury previously, but the pain was manageable. Now, since being put on prednisone the symptoms 100x worse. Perhaps the PMR is just progressing.

Seacat30 profile image
Seacat30 in reply to SMH4CRNA

I am not sure. I seemed to develop different symptoms after about 3 months on pred. I thought it was due to tapering too fast and went back up again but don't know now. I can't tell which effect is which.

SMH4CRNA profile image
SMH4CRNA in reply to Seacat30

I can pretty much conclude this is IT-Band syndrome r/t stress injury. PMR and/or prednisone may have made me more susceptible to injury with symptom manifesting 100x more since starting prednisone. In the end, I need to be more careful and be smart caring for my needs while on prednisone for PMR.

Seacat30 profile image
Seacat30 in reply to SMH4CRNA

I am going to see him on Friday and intend to ask about this again.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

It has often been commented that PMR seems to target our weak points or previous injuries.

Seacat30 profile image
Seacat30 in reply to PMRpro

I rode a stationary bike with too wide a seat several months before this all started. I am deeply suspicious of going near it now.

jinasc profile image
jinasc

You may also care to remember that the oxygen supplied to your muscles is impaired.

KASHMIRI1 profile image
KASHMIRI1

Good morning, l am having similar issues since the start of the year and not being able to walk very much is driving me nuts. I have extremely severe hip pain that radiates through my left buttock and down my leg plus increased neuropathy in my left foot. I shook a bottle of gaviscon three days ago again felt a muscle go in my right arm. Not great as l am right handed. My GP after asking me zero questions about this issue and immediately referred me on to a physio who will triage me on the 6th June. As my primary health contact l am not impressed with her lack of interest. All she seems to do is pass any issues l have onto someone else.Not sure how much knowledge a physio will have on GCA and steroids.

PMRpro profile image
PMRproAmbassador in reply to KASHMIRI1

The most likely reason for the hip pain is greater trochanteric pain syndrome (GTPS) - possibly the piriformis irritating the sciatic nerve which in many people passes through the piriformis muscle. Piriformis syndrome typically causes buttock pain.

The physio SHOULD be able to offer help on the GTPS although it will be slow just using stretches and exercises - but a good physio is able to refer on as well. Here they use extracorporeal shock wave therapy for trochanteric bursitis which does seem very effective and the rehab rheumy here swears by it. No idea if it is available in the UK - it is a variation on the lithotripsy used to break up kidney stones but adapted for soft tissue.

I find the hip pain can be relieved somewhat by taking a flooding dose of ibuprofen (800mg as a single dose) and using a hot water bottle over the painful area. Some people find icing useful - I use flexible freezer packs for cool boxes, wrapped in a towel to prevent skin burn. And the rehab rheumy provides lignocaine patches to numb/relax the muscles - the real rheumy (provides rather more aggressive techniques like steroid injections.

KASHMIRI1 profile image
KASHMIRI1 in reply to PMRpro

Thank you for you information and advice. I have been using ice and heat and have co-codomol at a slightly higher dose than available at the pharmacy. I will ask about patches for tbe pain. When l get to see the physio.

PMRpro profile image
PMRproAmbassador in reply to KASHMIRI1

My GP (also rheumy trained) says it is obvious that the antiinflammatory effect is significant - and cocodamol has next to none. I can't use codeine - but I do use a low dose of tramadol plus paracetamol plus 400mg ibuprofen and it seems to have a far better effect than any of them as normal doses alone. That is why I specifically say ibuprofen - 800mg is to flood the receptors effectively and then you need less ongoing, 800mg often lasts almost 24 hours for me.

But also have a look online for stretches to do - they do make a difference quite quickly. The first 2 here made a noticeable difference to the level of pain in just a few days

myhealth.alberta.ca/health/...

Frewen1 profile image
Frewen1 in reply to PMRpro

Hi PMR Pro, followed all that with interest - just to say I can't take ibuprofen because of a longterm hiatus hernia, so stick to paracetamol-based, and for really going wild, one codydramol a night for hip pain. (One done, a few years ago, the other now playing up).

Just coming back to the first post on this thread, I broke my ankle bone 11 months ago, just by stepping off the kerb and leg buckling underneath me - wore a boot (removable one) for 7 weeks, now discover the bone still hasn't healed and although I'm not in pain, surgery is now being recommended. Which is apparently followed by a boot for MONTHS. So, prior to next referrral, am waiting for a miracle. ("Oh look! It's all mended after all!" - kind of thing). However, as a result of all this, plus protein markers rising again, my steroids have been upped from 5 to 15, and further conversations with Rheumy are to take place about alternative treatment - I'd like to post something on that separately for your comments.

KASHMIRI1 profile image
KASHMIRI1 in reply to PMRpro

Thank hou

carolBF profile image
carolBF

MorningI really understand how you feel.

I have been off steroids for a year now because they were making my muscles tighten up more. I only had to walk down a step and I would pull the muscle in my calfs. The doctor didn’t believe me saying steroids don’t do that to you, they only make the muscles weak.

I am still in pain from PMR however the other pain I had in my lower legs has gone since tapering off steroids, and no more calf pain.

Since being off steroids my hips, feet and hands are still bad.

I am not a very active member on here as I hate writing however the support is second to none, just reading other peoples insight to PMR is invaluable.

Hope you heal quickly

Dolcelatte profile image
Dolcelatte

Sometime after my PMR started in Jan.2020, I began to feel pain in one leg, a kind of numbness and tingling toes. I had a few X-rays which showed knee arthritis. Lately the pain got so bad that I couldn’t walk or stand without excruciating pain. I posted a while ago and it was suggested I should go on a waiting list for knee replacement.I saw a Sports and MSK Physician who injected my knee with steroids. Two weeks on, pain is still there.

I am writing this just to point the coincidence about starting prednisolone and this deterioration of my knee. I bought a wheelchair to travel and to shop.

Previously I was a keen dancer and very mobile.

However, Prednisolone is my saviour for PRM and GCA . I am now on 7.5mg and coping well. No pains but the usual lack of energy.

I am on holiday in Italy, finally after nearly 3 years and so happy for a change of scenary!

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

Where are you? There is a 200km traffic jam between the Brenner pass and Lake Garda today - it is a long weekend in Austria and Germany. So a lot will have such a pleasant public holiday in their car parked on the motorway!Years ago we were were returning home from Garda and found a similar traffic jam heading north - so we turned off and went through the mountains so we were at least moving! But it took 1/2 and hour to cover the 500m between joining the parallel road and turning off to head east!

Dolcelatte profile image
Dolcelatte in reply to PMRpro

Hi, we flew to Linate a week ago and hired a car for one month (very expensive now!).We have a house 3km from Lago d’Iseo, bought by my great grandmother 130 years ago.

It is so lovely here and the people are so friendly!

Poor people stuck in the traffic jam, what a disaster. Luckily all is calm here. Not many tourists yet.

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

They'll be there soon - it's the beginning of the southern German schools being off for Whitsun, then they go back and the northern regions start their school summer breaks!

I really liked Iseo, went a few times with the camper. Would have gone more if it had been up to me, So much quieter than Garda which is always heaving. Which side are you on?

Dolcelatte profile image
Dolcelatte in reply to PMRpro

We are on the Brescia side. A village called Provaglio d Iseo , 3km from Iseo, where there is a very ancient monastery. Near the “torbiere”. And great vignards…Not to mention the food!

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

You lucky thing!!! We used the campsite at Covelo. I do like the Franciacorta wines - OH wasn't as keen - he didn't do the slightly bubbly everyday stuff which I enjoy.

If the traffic weren't so disgusting I'd hop in the car and come for lunch ;)

Dolcelatte profile image
Dolcelatte in reply to PMRpro

We might meet one day, now that restrictions are eased it will be easier to travel.By the way we were here when Christo built the floating piers to Montisola in 2016. Amazing!

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

I saw them just before they were taken down - as you say, amazing! You do know I live here?

Dolcelatte profile image
Dolcelatte in reply to PMRpro

Yes, I understood from your various posts that you are resident in the north east, Trentino or Friuli? I read the very helpful advice you give to people with our condition . I must say that the slow tapering, like reducing by half mg instead of 1mg seems to work for me. I spoke to my rheumatologist before coming to Italy and he agreed with the plan. I didn’t want to risk a flare up whilst away from home. He was very understanding.

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

No, Alto Adige, Suedtirol to me as a German speaker ;)

Viv54 profile image
Viv54

I got tendernitis in the first 6 months of taking pred, i was just walking when the dreadful pain shot down my leg , it was if i had snapped a tendon ! I hobbled to a bus stop and some how made it home. Not long after i got it in both legs .I am sure it was the Pred that caused it. Anyway i read all i could find about it,rested a lot , then gradually did stretching exercises. I use stretch bands now, i still get very tender calves , so im careful at what i do , do not want to go through that pain again, im sorry i know just how you feel.

Googleeyes1 profile image
Googleeyes1

just getting over same injury in left leg it's caused by keeping your foot still and twisting body and leg to left as in reaching for something.I didn't put it down to pred .as I have ehlers danlos connective tissue disease. it is quite common for me.rest and gentle exercise could get it right unless it's torn in which case it will need repairing .been on pred for over two years and it's caused my bones to crumble including my spine pred is dealing with the devil get off as soon as possible and keep off . i did mine sat in a chair. get well soon

Swdai profile image
Swdai

SNAP !! I am nearly 70 & Since being diagnosed in February 2020 I have suffered a stress fracture of the fibula ( after riding an electric bike on the flat !!! ) and on 3rd January this year my Achilles tendon totally ruptured - I was in a plaster cast for a month ; non-weightbearing then in what I call my 'Spacetrooper' boot ( with wedges ) until 28th March . However the week before I had to see my ankle consultant regarding my other ankle which I am having to have replaced due to osteoarthritis - he gave me another steroid injection to relieve the pain - and he decided to examine the Achilles injury and was astounded that after nearly 3 months it had not healed at all- there was a two inch gap between the ends .

I had an operation to repair it three weeks ago - they took the tendon from my big toe , screwed it into the heel bone then sewed it on to the Achilles tendon - incredible what they can do these days and I now have at least 6-8 weeks in plaster / the boot . Unable to commence any physio for at least another 6 weeks - I have literally no working calf muscle in either leg. So that will be nearly 8 months of this year gone by only wearing one shoe !!! The punchline is that I was told by the consultant ' it is down to your steroid intake - it weaken bones, muscles and tendons and makes them susceptible to injuries' .

Welcome to PMR !!! & I used to swim for GB and was fit and healthy before 2020 - PMR is so very frustrating but I do take the view that I still wake up every morning , work from home in the family 24/7 business, and , at the moment , get around our bungalow in a self propelled wheelchair ( £199 from Argos - if anyone needs one ) which maintains my independence - much to my husband's annoyance at times ..

Take care everyone out there - it really does not matter how careful you are if PMR is going to cause you any muscle / tendon or bone problems it will !!!!

jls93 profile image
jls93

Where is your discomfort? ie front or side of knee, out side of thigh, glutes? And a couple of adjectives to describe it? Have you had it before historically?..thanks

giraffegal profile image
giraffegal

Sorry you are having a rough go. I am having similar pain and immobility. It’s exhausting. Trochanter bursitis seems to be the dx. It was triggered by tapering and started in right hip and thigh. Now has migrated to left.

X-rays, MRI, Cat Scan and bone density were all run to exclude orthopedic or osteoporosis concerns. I will have to increase my prednisone to 25 mg as each time l try and taper l have a flare.

Fortunately my bone density showed a 5.1 increase in my spine, so relieved as endo was pushing me to go on osteoporosis drugs. I am seeing pain specialist later today. Will ask for injection of toradol ( anti -inflammatory ). I hope you find relief soon.

Has anyone suggested you have full thyroid panel? My lack of thyroid adds complexity to my scenario. Being even minimally hypo thyroid adds to tendinitis.

And please do have your medical team check your potassium, Vitamin D and magnesium.

I am frustrated but hope increasing prednisone will help.

I am almost 77. Lots of stress due to husband’s declining health. Despite the pain, it was reassuring to have my labs and digital imaging exclude other issues.

Glad to chat by pm if you feel it might help.

Annie

PMRCanada profile image
PMRCanada

After suffering for a year, I’m guessing the diagnosis was most welcome….at least you could now come up with a treatment plan to get some relief.

I found diagnosis a double edged sword. Relief that they figured out what was causing the progressively worsening pain and stiffness that started on my knees and moved up to my neck over the course of 6 months. Pred caused immediate pain relief, but I jumped back into pre-PMR activities causing DOMS. Adjustments needed to be made regarding my physical activity and I found deep water exercises particularly helpful as I also have OA in my knees.

The other part of diagnosis was learning to accept that I had a chronic illness. That took some as I was only 55, recently married and retired early. I was angry and in shock that my retirement was not what I had envisioned, and that I could not be the mom, wife, friend that I had been prior. At times I was sad and I isolated myself because I just didn’t feel like myself. I even was in denial for awhile that what I had was even PMR. Some folks around me forgot I had a chronic illness because it was “invisible”, especially when the pred was working. Some could not accept my illness.

Finding the fine folks on this forum was very helpful. They “get it” and they provide a place where I can ask questions and be supported, thus reducing my isolation. At times I think my questions are confusing or not straight forward, but they are patient and kind. Sometimes I just need to complain and they provide an outlet other than my husband (who may get tired of me ranting after 4 years about my PMR woes).

I do hope you get some relief sooner than later. Know that we are here for you, and keep us updated.

PUMC profile image
PUMC

One day, I was feeling very good; and after my 3 mile walk, I continued to do some shopping and housework. At the end of the day, my phone said I’d walked 7 miles. I was really proud going to bed. The next morning, I could barely walk, and the pain was in the I T band on my left side. I self diagnosed (it may also have been bursitis), but I definitely knew the culprit: PMR. I essentially laid low for a few weeks and got better. I’m in my 3rd year of PMR and have finally learned to pace myself. I keep my walks to 2 miles each day if I’m planning to do anything else. PMR is a strange affliction. Some days if I walk too much, my hands hurt the next day. Go figure. I’m sorry that’s your diagnosis. I, too, was very active: played sports, never sat still. I keep hopeful to be my old self, one day.

A77bruin profile image
A77bruin

Oh ya…..I would say so. I tore BOTH of my rotator cuffs! However, my orthopedic surgeon wouldn’t operate until I was down to 5 mg of prednisone. So I had surgery on my right rotator cuff in March (I tore it 4-5 months ago) … it is healing very slowly. In the meantime, my left rotator cuff got so bad while that now I need shoulder replacement - scheduled for June. Yep….between PMR and Prednisone, I’m a mess!

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