I’d like to plug a question into the collective experience bank about tendons. So, started on 60mg in March 2017 for GCA and now on 1.5mg as of 2 weeks ago. Previously at 54 I was very fit and active. Around the 20’s my muscles vanished and I was affected from top to bottom with a high susceptibility to injury. At about 10mg this started to reverse and my strength and injury resistance has increased, but my muscle bulk is still nothing like it was. After the first couple of months when I was too weak I made sure I walked 2-3 miles a day with the dogs with no ill effects but my upper body was useless.
My problem now is progressive tendonitis for the last 4-5 months especially in my Achilles which are thickened and tender. Getting out of bed can be a trial but it loosens quickly after my first hobble to the loo. The next bad bits are in my forearms at the elbow end and at the base of my skull if my posture is bad (keyboard use!). Other ligaments can be tight but all my muscles are fine. On my recent cruise holiday I walked on totally flat surfaces and carried no more than my book and it improved immeasurably. I even managed to run/walk on a treadmill daily for half and hour plus walk about 5-8 miles a day on pavements; I thought I was cured. I was ecstatic. Back to home and within a day it’s back and I’m gutted. I so need to get proper exercise and am fed up with having my wings clipped for over 2 years.
I do have previous with my tendons when I was crippled for 18 months after regular use of Quinolone antibiotics in 2004 which resolved spontaneously. Then it was my Achilles and forearms. I also have gait problems due to my feet with a bunion starting when I was 16, but with good footwear I have so far avoided my mother’s feet. Two podiatrists haven’t been much help (didn’t inspire much confidence at the time) and physios have never helped but I am willing to believe they were the wrong people.
My working theory is that the Pred effect on my musculoskeletal system has probably done for my silently still damaged ligaments from yesteryear. I am at a loss as to what avenue to go down because I’m terrified of the wrong person crippling me for life. I will go to my GP but suspect all I’ll get is advice to take NSAIDs, rest and physio who’ll just give me an exercise sheet for what I already do now. Any thoughts?
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1. Where were you on holiday and what was the difference in the environment you were exercising in ? e.g. temperature , humidity , facilities or Enviroment , what you did before and after activity.
2. Have you been assessed and fitted with innersoles or shoes that help with Achilles Tendon or been to an orthopaedic unit to have this and your elbows assessed ?
3. How has your mood , or your activities and diet changed since returning home?
This might help in giving you some informative answers.
As you say the GP won't be able to do much accept referrals but getting the right ones will be key to helping you get relief from these issues.
My problems weren’t worse than they were before we went, just that I picked up where I left off.
1. I was on a Baltic cruise, so all over the place. The temp ranged between 🥵 and air con. Three hot tub sessions. Gym (treadmill only) 6 out of 12 days. The most notable thing was even ground all the time and I walked the stairs always.
2. I saw two different podiatrists from two different firms a few years back because I wanted to halt the development of my bunion. Both gave me inserts for my shoes but both were rigid and unyielding bits stuck to an ordinary insole which didn’t fit any shoe except and wide walking shoe.
BUT one good thing was I went to a complimentary gait analysis thing in the ship’s gym with a pressure pad/computer set up. I was assuming some snake oil money making thing but was interested in the readout. Of course he was pedalling a Foot Doctor insole made with carbon fibre. It made such a difference that I allowed him to fleece me. I have to say that they have made a big difference to my even ground tolerance so I’m not limping by the time I get home.
3. Diet on holiday was atrocious by my standards plus two glasses of alcohol every day instead of per week for two weeks. It was marvellous but I was glad to get back to normal, especially lower salt!
Back to being at home with my poisonous father-in-law, but I don’t think I can blame it all on that! Also got my two daughters home for a year 😁. I came home full of beans thinking at last I could get going again but one dog walk later ouch.
4. Activity the same as it was before, mainly in house doing household jobs eg carrying hoover but walking on hard uneven ground and I did some weeding (grip and twist). On the cruise, apart from being bone idle all I did was eat and walk walk walk.
"Back to being at home with my poisonous father-in-law, but I don’t think I can blame it all on that!"
I wouldn't be too sure ... My MIL (equally poisonous) and both daughters at home would finish me! Not to mention , OH turned the corner with the Big C on the death of his mother.
And the walking on uneven ground - I can't either.
So do you still have the carbon insole from the on ship assessment ?
Can it be used in any shoe ?
Do you ever have a hot tub session at home?
I'm not suprised that you could cope with sparkly heels on flat surfaces , with the Achilles , if it has tightened one of the therapies is to add a lift in the heel and use some compression and then slowly reduce the slope as the tendon improves.
The Air Conditioning and near constant stable temperature plus fresh air on deck without doing chores will have helped too . No taxing of the " fight or flight" responses so less tension and then tightening of the muscles and over doing it for the ligaments.
You may have been eating and drinking more , we all do indulge on holiday , and you would be grateful to be back to a simpler diet but perhaps some of the foods you were eating had more of some trace nutrients or more collagen that helped with some for your symptoms.
Uneven surfaces , gardening , carrying Hoover's, chores, general decrease in mood and post holiday Fatigue plus the stress of returning to normality all adds to the tension in our muscles and puts added strain on the ligaments and tendons.
It definitely does sound like a trip to an orthopaedic specialist , with an interest in ligament and tendon issues rather than a podiatrist would be of great benefit to you.
They have more ability to order better quality products for slow corrective treatment that covers all the body issues , they can also send you for the right tests or gauge whether any surgery or injections are required to help improve the problems. They will send you to physio , but at least they will have done a more thorough assessment and the physio will know what work you need to do. I would definitely get a referral from your GP . Or get back on the boat!!
I can tell that my limbic centre of the brain was anaesthetised as I sat on our rear balcony sipping tea at 6am in my pyjamas, slipping through the archipelago to Stockholm on calm, silken water and no wind.
Vitamin D , E and B vitamin complex can help with certain issues . Increasing the amount of collagen in your diet from eggs , lean meat and fish can help you build from within. Magnesium and zinc can help with tissue repair if you have an injury along with extra vitamin C . And as ever , good hydration and some fresh air .
Helping to heal , improve or strengthen these body parts has alot to do with gentle flexing and stretching exercises to return elasticity to the affected area , built up gradually over time , sometimes using added supports or lifts if they are required .
When I had my quinolone induced achilles tendonitis I did find literature that suggested the tendency for it to happen remained longterm (sorry).
What was different? Different footwear?
When I had foot/leg problems pre-PMR my chiropodist neighbour told me to request a referral to a specific podiatrist at Durham hospital, her and no other. She took one look at my ankles from behind and while walking away from her and prescribed tailored carbonfibre insoles. They were amazing!
Unfortunately I don't know what to suggest to find such a magician since the Dundee podiatrists had been worse than useless!!!
My footwear for walking streets was my usual dog walking shoes. On ship I wore a sandal with a slight heel, same as at home or tottered to dinner in sparkly heels, not like home!
My feeling also is that I need to find a gem in their field who looks at the patient and not some protocol.
you just reminded me of something that happened couple of weeks ago. I had foot pain and complain to my PT and he looked at me and asked if he can borrow my phone. He then took a picture of my feet from behind and pointed out that there is an alignment problem in my ankle that was causing my foot and my knee pain. Our bodies would try to adjust, but sometimes compensating for one issue creates another problem.
Yes - that's exactly where my problem was and the out of balance feet were/are stressing the low back muscles! Unfortunately my feet aren't going to change!
this was new for me, because I was trying to change the way I walk, and developed this issue. He gave me simple exercise to correct it... fold a towel and put it under the side of the foot that needs to be lifted ( in my case was inside of the foot) and then do usual exercise ( squat in my case) to strengthen muscles in aligned position.
Keep looking for the right person to help you with your feet. It's also possible that other areas, like knees or hips, or even spine, need some exercises or strengthening. One part of the body affects all the others. I've found my feet have been a lot better since for totally different problems at different times I started doing some knee and hip exercises. Go figure!
As for being better on holiday, I posted not long ago that I think being at home makes me sick, and I don't have the stresses you do. I'm always better when away and have no idea why.
As always with any big illness I go to counselling and GCA was no exception because I knew that my father-in-law (a damaged man) was triggering all sorts of inner stuff that was the straw that broke the camel’s back.
Physically I feel very wonky and think I’ve lost the sense of what’s right and what is not in terms of alignment. Perhaps Alexander Technique? I’m currently doing bits of Pilates and Tai Chi.
I have no real spatial awareness of where my body parts are. Everything's feels slightly out of sync....this has been going on for some years now. I think something like Alexander technique might help me. I do stretches to try keep muscles flexible and have to watch my feet on rough ground if I don't want to fall. If I try and look up When walking that's the kiss of death...dizziness and legs go where they want. I have had tendonitis if some description in my right knee and elbow and left ankle. My right heel and left calf also become quite sore if I overdo things....like last weekend!
Yes , well done Pro , my autocorrect did not like the correct spelling , and I hadn't reread it , hope I hadn't sent Snazzy on too long a wild Google chase!
I looked when you posted. It's like npl for the body. I was lead onto Rolfing, which I didn't like the sound of.... particularly as Rolfing means vomiting where I am from and is also an onomatopoeia to my ears.
NPL ?? Sorry got a fuzzy head , what is it short for , I'm clearly being lazy ?
I have no idea what Rolfing is !!! You got to that by Googling either spelling of the two words above , sorry !!!
The Feldenkrais Method is a way of retraining to move your body more consciously and deliberately in the most regular movements that we do , including breathing , sitting , rolling over , standing and walking. It's meant to help you learn how you body moves and how to stop causing pain to it by overcompensating in the wrong way for your injuries .
It was conceived by Dr. Moshe Feldenkrais , originally as a way for him to learn how to recover quicker after a martial arts injury . In fact he wrote books specifically on awareness in movement for Judo as well. It has been developed to help people with Mental awareness and Emotional Confidence too with books relating to Handling , Actors , Education and the Workplace written by him or with his help by the people who trained with him.
I have been helping to improve my body awareness and breathing using it with many other gentle techniques to reduce the stress triggers of sudden movements to my Pain and POTS related tachycardia .
Qigong , and this method , are good starters for people with many Chronic pain conditions , or tissue and ligament injuries, along with Hydrotherapy , when they have injuries that need a slow approach to improve , have severe pain or balance issues , heart or stroke related issues , or have mobility issues and are chair bound.
They are like Pre Tai Chi , and are part of Tai Chi warm up, and Pre , Pre Yoga Methodology without putting a burden on the joints or causing adrenal/ hormone/ autonomic reactions ( sweating and flushing) that can happen with Yogic Breathing.
A good start , especially if you have been inactive for a while , after illness or a Flare , and helpful for symptoms of anxiety and Depression.
Sorry... NLP....neuro linguistic programming. I did lots of kinesiological physiotherapy in the 90s to try and improve my body consciousness. I do a series of stretches for my back and sciatic nerve several times a day that I have done since 1999. Pre PMR I was reasonably flexible (given nerve damage) but my muscles have become more spasmy in past 3 years.
The Rolfing was basically have ten sessions of hands on therapy lining you up with gravitational fields. Not my cup of tea I don't think as it's pseudo science with a bit of woo. I think there are magnetic fields of varying strength on the earth but not convinced I can utilise them. Though I don't mind hugging a tree or two.😉
Definitely , not Rolfing , very similar to NLP , in fact I wouldn't be surprised if NLP of the 90's actually grew from the original works if Feldenkrais .
Most newer Physiotherapy , Psychological and Neurological Approaches do seem to have his original processes and ideas as the foundation , and first few steps, in their therapies.
Absolutely , definitely not Rolfing ( which my auto correct keeps trying to change to roofing?!! ) Which , if I took part in it , with my Fibro and Neuralgia issues would probably cause me to suffer the sort of Rolfing you were originally talking about!😋
Hugs so firm to stretch your weary bones out , poops my chum 😘😘💖
I think we should choose our exercises based on the names we fancy - and perhaps invent some of our own. Going Rolfing sounded fun until I thought of vomit - and Feldenkrais sounds like an exotic cheese (well we are talking feet..)
When I used to go to the gym years ago the smells that emmanated from the free weights room were....I haven't got a word that expresses it. But the blokes didn't seem to notice. I had a towel over my face and earplugs!!
It's very low impact so would be more like one of those mild and fruity soft cheeses served with a glass of wine.
Qigong being a little more active yet relaxing , so maybe like a serving of exotic fruits added to the cheese and wine evening or an warming aperitif before a big meal .
Oops Snazzy , auto correct changed the spelling , I've just corrected it thanks to Provide sending me a reply , so I hope I didn't send you on a long confusing search.
I have added a bit more description of what it is in reply to Poops on this post too , as way of an apology !!😁😘😘😍
Yes, it's a Freudian remark by my increasingly deranged autocorrect function on my tablet with a mind of its own .
I will have to get back to the days of reading everything as soon as I post because often it changes the words after I press send , even when I had already checked the spellings beforehand.
I should just call you Brains all the time. , It's alot simpler and very apt for your skills.
My favourite about three years ago was when I was looking up suppliers of Terry Towelling and it's asked, " Do you mean pterodactyl?"
I would have been really surprised if they could have located suppliers of them anywhere in the World , let alone the UK! 😂😂😂😂 🌴🌴🌋🌴🌴
( By the way you got a volcano and some palm trees as I didn't have a dinosaur emoji and it was the only thing that came close to appearing vaguely Jurassic 😋)
Hi, I have had trouble with the tendons in my feet and hamstrings for over a year because of the Pred journey, a Physio told me Pred softens tendons. I tried insoles and all sorts of exercise, eventually I joined a gym, about 6 months ago. I use the resistance machines and do leg curls, after about 3 months I saw improvement and currently have no tendon problems, I also use the shoulder press and similar and it has really helped my upper body. However, I did get carried away and upped the weights and pulled a back muscle because our muscles get so weak. This is my experience not a recommendation because i can't afford a personal trainer, I just google about strengthening and have made my own plan. I have recently started using a cross trainer and find it much easier on my body than a treadmill. I am down to 2.5mg and am shocked at the tiredness and pain that has suddenly returned. I have booked a blood test because I think I am going to have to go back up. But if there is inflammation I want to try to prove it rather than mask it with more Pred. (GCA 3.5 years, suspected PMR 6 months ago) I am fed up of yo-yoing and have done dead dead slow to get this far.
Yes, I have wondered about biting the bullet and try some gym stuff, mainly because with machines it is easier to avoid wobble in the movement. However, one has to be mindful of needing to strengthen the small ones that stabilise joints which are not worked with ‘linear’ movement. My muscles are fairly robust it’s just the end bits that aren’t. I can’t cope with Cross trainers, as in for some reason I just can’t do it and look dignified.
Is your pain the same as your PMR pain? Since being on lower doses I have found withdrawal and/or adrenal issues cause flare up of fibromyalgia. I’m assuming it’s not PMR pain because my muscles don’t hurt. Perhaps your query ought to go in a fresh post.
I only have suspected PMR so I really don't know if I have Pred pain from weak muscles or what is causing it as there is total disinterested on the medical front. I am currently demanding answers on the advice of the opthalmic consultant who was sympathetic but didn't know the answer
Tricky. It seems that in the absence of a definitive test it is down to history, response to Pred and if you’re lucky, changing inflammatory markers. If it’s any help, my Pred muscles were just very weak and any extra effort, which wasn’t much, felt like a pulled muscle. Rest would make it go in a few days to a week.
If you worry about the wobble or rebound Fatigue , floor or chair exercises with resistance bands , using a cycling machine , aquacise , gentle swimming , walking and other " closed knit" exercises are better suited to our current needs than using weights or alot of more cardio drag intensive gym equipment.
Because you have two aspects happening in the muscles while on steroids , a reduction in collagen processing which makes the ligaments and tendons more stretched and loose , but also a tightening of muscle tissue and muscle shortening from less activity within some joint areas.
I suppose you could picture the muscle like a pair of knickers that have shrunk in the wash but whose elastic has lost its snap.
Using weights can increase the loosening and stretching of the ligaments and tendons before the muscle tissue has time to cushion and protect them .
It's a type of exercise that it is recommended to avoid with Connective Tissue Diseases , and to a much milder level the muscle , tendon and ligament issues suffered by people like me with these issues happens in the muscles of people using long term steroids.
By helping to build back muscle tissue and stretching it more gently before trying weight work or weight bearing exercises you are more likely to regain better shape, cushioning, and use in the dense ligament areas and around the tendons , and are also less prone to pulling a muscle or tearing the tendon entirely as you try to regain full use of those tendons.
One of the best things you can do , as we have discussed already , is get the tendons causing most issue assessed by the appropriate specialist just to ensure you don't need to use any lifts or supports for vulnerable areas while you are working them back to shape and strength as well. If worked right these supports or lifts are reduced in size and you may not need them at all in time .
If it is a decent gym the staff should provide advice "free" - i.e. in the cost of your subscription. They should tell you which exercises apply to which muscles - and you can have the input as to the weights/resistance used. They will want you to use more - you have to explain for rehab it is less. You may even be lucky and find a staff member who knows about rehab.
They should, but unfortunately you can't guarantee their knowledge and you need to be really careful . Most of them know a lot about sport and using gym equipment but not many have good knowledge of physiotherapy or what equipment is appropriate for use with injuries or Chronic pain issues.
If you need that sort of help you are often better seeking advice from a qualified physical therapist first , or going to classes specifically created for people with various types of joint and muscle issues then using what you learn at your own convenience.
In the UK , you can get signed up to free, or highly subsidised , classes via the exercise referral scheme through the GP , your Specialist , or the physio , it also gives you cheaper entry to other classes , exercise rooms or the swimming pool when not taking referred classes so it's worth signing up to.
Absolutely , I include personal trainers in with Gym Instructors really , physical therapists at least , that you can sometimes get referred to via physio, have some more occupational training , are more used to dealing with injury or chronic issues and are quite often in charge of the classes available for those with illnesses and arthritis.
You can get double help going to a recommended class because you can ask for lots of extra free advice on other sorts of exercise you can do , and get them to physically show you at the end of a session better ways to do your other sports and activities without having to shell out lots of cash😋.
Exactly , it's all hit and miss , you can have some great well trained instructors , often with more knowledge than many physios , and you can have awful instructors from every branch of physical instruction , medical or recreational.
You just live in hope that the ones recommended to you by exercise services will cut the mustard.
Unfortunately, it is just as hard to find out instructors experience and background as it is to try to discover the knowledge of your Specialist or GP about the condition , like PMR , that you are suffering from.
That's why it's always worth while doing a bit of research before you starting using a Gym , Spa or Instructor , and it's always preferable if you can find people with the same conditions as you who know somewhere , or someone , that they can recommend.
Bad instructors and physiotherapists can sometimes cause your more damage and injury than no instruction at all.
It's a bother but Pred does affect tendons making them more susceptible to injury and the Achilles is the largest tendon in thge human body. Mine was nasty for a while - especially if i walked uphill and stretched it more than it liked. Exercises initially given by a physio made it MUCH worse as they were really designed for sporty people who get an injury - not as a result of taking pred. So I watched that leg - calf muscle atrophy until I was able to get it moving again - but VERY slowly rather than attempting any extreme exercises. it is a result of the Pred and mine also gave me hellish night-time cramps for a fortnight - awful !! But I have managed to stop it happening again - probably due to tapering down and by not over-stretching that tendon/muscle/calf by doing things like walking up steep hills. Unfortunately it is one of those 'side effects which 'some' of us seem to get - but for me better tham losing vision ! Hope it improves soon.
Yes, Just walked dogs up a slight incline and they were screaming. They recovered their composure on the down hill but my ankles felt like they wanted to give way. What do you mean you “watched that leg.....but very slowly”?
Unfortunately , it takes awhile to get to the point of any uphill exercise without causing pain as you start to regain full use of your Achilles. Your leg curls probably did alot to help lengthen the muscle and get those tendons back to were they are now. As you say it took a year of hard work to get it feeling normal again. You sound like you are doing well now though , well done you x
Ah, a few hours away on a good day but a bit too far for me as I’m still not driving much distance due to lack of attention span. The train journey would be complex. I’d still like the details though, you never know.
I am at the same point in recovery. Had PMR for 3.5 years and currently on 1.5mg. I felt the best at 5-6mg and then different pains/ weaknesses showed up at lower dose. I feel I am stuck in a loop; I up the level of exercise and end up with pain and have to back off. About a year ago I stretched my ACL on the kneee I had surgery 25+ years ago... I have been seen PT, and he was trying to guide recovery, but it is very slow.
Here is what I learned:
- because of the weak muscles/tendons and damaged knee cartridge (same surgery), for me it is better to do isotonic exercise then isometric. Nice thing is that they can be done at home r anywhere, and don't require special equipment. My muscles and tendons respond better. I see PT every 2-3 weeks and he gives me "homework" to do. Still it is slow progress.
- walking... My wife told me to "walk from the hips". So walking from the hip means using your core to power the step and your hip should lead your step and legs should be relaxed and just follow/go for a ride. Try it.. I am learning how to walk again :). When done properly it is very relaxing and one can walk for ever without getting tired. (As you may know Japanese are one of the fastest walker ( on average) in the world. I pretty much have to go into light jogging to keep up with their pace.)
-Pick the sports/exercise that you can do (at this point). Better then trying to do something that potentially can hurt you because of muscle/tendon weakness.
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Worried...new symptoms of pins and needles, muscle deterioration, fatigue, continuing hip problems
Root canal, two surgeries and an ablation. 
Suggestions for Achilles Tendonitis
