I was diagnosed with PMR as recently as Friday 20th October 2 days after my 58th birthday. My symptoms started in July with neck pain which quickly spread till I was in so much pain, I couldn't get up the stairs without a handrail. My Inflammation levels in August were 16 which is why they struggled to fit me into a diagnosis box and it was only with insistence of more blood tests that came back as 46 on 11th Oct that they finally put a name to the condition.
Upto then I've been competing for my Country as an GB Age Group Athlete for Aquabike (Swim & Bike), I literally completed (not competed) at the World Championships in Pontevedra, Spain on 24th Sept 2023, I say completed because I couldn't compete against those I've beaten on many occasions as I had no power or energy to give it my all, I was delighted to just get around, not come last and have that precious World Championship Medal, I was doped up on painkillers and was assured that race day adrenaline would get me through (this was right), I have a coach and trained 5 days a week, I was absolutely loving my life and I was County Swimming Champ too, so you can imagine I've gone from all that to Zero.
My PMR started in July in my neck, then spread to my shoulders (can't raise to shoulder height), hips (can't bend down) middle back (can't breathe in full max) and the backs of my legs, pain when sitting down. Sitting down for more than a few mins, I can't get up without considerable pain and effort and walking very slowly. The painkillers have made me feel queasy and out of sorts, (Co-codamen, paracetamol (didn't get on with naproxen) and ibruprofen, these just took the edge off. but left me feeling queasy and out of sorts.
Now I'm on Pred 15mg for 4 weeks with a follow up GP appointment planned.
I'm gutted, its an emotional rollercoaster, but pleased to have found this group forum>
I have a question -
I've not been able to sleep since starting the steroids, I literally used to get 8-9hrs/night to just 4 hours last night - any advice here would be most appreciated. Note: I'm taking the 15mg Prep at breakfast.Read more
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MalloryMoss
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I am so glad that you have now been diagnosed. In fact painkillers really don’t have a look in as far as PMR is concerned, it is very much steroids or steroids. PMR is life changing and we do look back at the previous life we have lost. We can come out the other side though. Steroids do have a lot of side effects. I used to be able to fall asleep in seconds, it can now take hours. I have discovered the BBC World Service though! I don’t know if you are interested in gardening or looking at gardening pictures, but a group from this board set up a Facebook group recently for PMR and GCA patients to try and make things more cheerful and colourful for ourselves. facebook.com/groups/6288051...
Hi Piglette nice to meet you. Yes regarding gardening, we bought some garden off our neighbours this year and built a greenhouse and fruit/veg plot so its definitely something I enjoy, growing our own was amazing this year, we learned a lot too.
Thanks for the advice, it seems sleep deprivation is a thing, good idea about the world service. It's disappointing as I love my sleep, I used to listen to sleep podcasts, I may try that again as it worked before
I’m so sorry that you have suffered what many of us have and that is having one’s very active lifestyle stopped rapidly and a new one in place of it. Then you are given steroids that make one’s mind and emotions race and prevent sleeping. It is no wonder it is like being slapped in the face with a large salmon. There are some people here who were doing sports quite intensely when they were diagnosed and the anecdote we always wheel out is the story of Skinny Johnny. We went from wheelchair back to climbing peaks again.
Saying that, for now it is best to accept this is where you are now and allow your body to decide it is going to stop attacking itself when it is ready. The Pred is just there as a safety net to prevent the inflammation causing damage. For those who are used to pushing themselves or using will power in buckets, it is the first and very hard lesson because it doesn’t work for this. I’m sure DorsetLady will post their welcome full of information that is good to read.
Your body won’t be fully used to the Pred yet so it will settle to an extent. Lack of sleep is a pain but you need to take time off and nap when you can. In the meantime don’t read too much into any racing mind, sweats, fast heartbeat and sometimes anxiousness, it will ease, especially when the dose is reduced. Also, you need to watch your carbohydrate consumption closely to avoid glucose high’s and corresponding lows that fuel hunger pangs. The extra energy you might have is false and don’t be tempted to rush about doing things when the pain is controlled and it feels like you’re back in the game. Resist that and rest.
SnazzyD, Thank you, I've learned a lot just reading your reply, very helpful, you hit the nail on the head with rushing around, and feeling good thinking I'm backing the game, I'm already starting to feel the benefits of the steroids, I'm walking normally and climbing the stairs normally, I must remember not to overdo it. Listen to my body is loud and clear - thank you
Difficulty sleeping is pretty much par for the course for many although it isn't something I have too much experience of personally. Maybe it was because being free of pain after 5 years of disturbed nights being unable to turn over in bed was such a relief!! Usually it does improve as your body gets used to the dose and as you are able to reduce the dose as well. But don't try to go hell for leather reducing - that just doesn't work at any stage and for the time being try to relax and catnap if you can, If you feel you could sleep - drop what you are doing and rest. Others do have techniques they use to get though and will be along and tell you at some point.
I'm surprised the painkillers even took the edge of to be honest - have you stopped them? If not - I would, they aren't helping and are storing up trouble themselves. It ever ceases to amaze me how docs will hand out a cocktail like that and have kittens about a few mg of pred.
I won't guarantee that you will be County swimming champion again but you may well get back to where you were - read this story for encouragement:
What is important is to NOT try to force things now. John was in a wheelchair so obviously worse than you and he credits his recovery to the hydrotherapy he got through the Fire Service. You start small and build up slowly at any level - and if you suffer badly with fatigue, it is like ME/CFS, you can do a lot of damage if you overdo it, so listen to your body and don't ignore it.
PMRpro thank you for your reply - very helpful. Yes I'm off the painkillers thank god and its good to hear the insomnia may improve over time.
This reminds me of when I contracted Glandular Fever and Hepatitis B of the Liver in 2005, it took me 3 years to get my life back, so it feels a lot like this, I was told by Drs at the time that if I didn't start gentle exercise (after about 3 months) I would be on the road to ME, that was the best advice I got, this started me on my road to proper recovery. I got quite good at listening to my body, I need to get back into that routine. Thank you
Hi there, welcome to the forum nothing specific to add to the comments already made other than no question you ask will be regarded as daft and we have night owls and members across the globe so if you feel the need to chat and/or rant at any time there will usually be someone around.
Wellcome. Regarding sleep. It has helped me to take the pred. as early in the morning as possible maybe even at 3 AM (if you are not sleeping anyway 😂) Otherwise it will also settle as you get use to it, or when you eventually go down a little in dose. And pace yourself - very difficult when being young and active and used to be able to just push through any obstacle - after 4 year I am still in process.
I would ask your GP to prescribe zopiclone sleeping tablets to see you through this insomnia. It is very common when you start heavy steroids, but it will improve. Having some tablets, just to get a night's sleep a few times a week is wonderful.
Thank you YogaJM and I can't wait to get back to Yoga as that was the one thing that made me sleep so deeply and long. When the pain in my shoulders has diminished, I shall be back..slow and steady
Welcome to this group - it can be so helpful as you find your way through PMR. Sounds like you’ve been a very fit person so I feel it’s much harder to come to terms with it all. I found the sleep situation improved and I sleep pretty normally now. The biggest thing is to pace yourself and take things easy. If you try to fool yourself and go hell for leather at something it will most undoubtedly bite you back. For me this was the hardest lesson to learn. Saying that, over the years I’ve had PMR I did get back to golf, Aqua Aerobics a few times a week and travelled widely including to the Arctic and Antarctica. This group and especially PMRPRO and DorsetLady have been a godsend to me. Don’t be afraid to ask any questions at all. PMR can be a lonely place too as it’s hard for others to understand as you still look ‘fine.’ Take care 😊
Thank you Janet57, Yes the most upsetting thing for me at the moment is the realisation of a different way of life but I'm also optimistic and becoming increasingly realistic. I've been somewhere similar before, in 2005 I got Glandular Fever & hepatitis B of the liver, and it took me 3 years to get my life back and start my road to exercise. I realise I'm on a journey now and this forum is a god send
I was 61 when diagnosed, similar development of symptoms as yourself but my ESR and CRP were high. Started on 25mg pred and thought I was going mad - head buzzing, energised 18 hours a day, sensory overload, unable to sleep. It calms down after a while and everyone else on this page has given you good advice. All the best x
I had insomnia early on but as my dose decreased, that went away. I also allowed myself naps as needed. Still do as fatigue is still a common symptom for me. I would caution you… as you start to feel better physically you will need to pace yourself. Remember… the prednisone is masking the disease by mopping up the inflammation. So don’t overdo it and jump right back into full blown training right away. Take is slow and steady!
Thank you cranberryt, good advice, yes the pace myself will be hard as I would just crack on as normal so I'm going to have to be mindful and be very cautious
Hi I was an enthusiastic ballroom and Latin dancer before woke up unable to move my legs 3 years ago. Today I am back to dancing twice a week for 3 hours each time. I cannot comment on steriods since I am on alternative drugs but wanted to say to you ..... keep the faith.....you will get your fitness back ..Good luck with this difficult but doable journey ....
Welcome to our wonderful group here. My advice on the sleep is this. I had them prescribe 10 mg amitriptyline for pain because some studies showed that 25% of people get pain relief from 10-20 mg (that is a low dose for this drug). It really has helped me, as a former insomniac it has been nice. I actually asked for that and started it BEFORE my PMR diagnosis..when I was trying t find anything to help the pain. Anyhow, I have had no trouble sleeping on high Pred mgs. I assume it is from those 10 mg of amitriptyline..it's worth a shot, regardless.
If you do opt for the middle of the night dosage (I did that for a while, 2 am so the pred is at work by 4 am) be sure to have a bit of food ready. Some people like half a banana, I always had a small helping of plain yoghurt (2% milk fat) and that worked well.
Also discovered quite by accident that taking one of my calcium doses at bedtime really helped. Some have found a similar effect from magnesium. Being a lifelong intermittent insomniac it was quite a revelation to discover that about 300 mg of calcium in my bone health supplement had such a sleep-inducing effect! It also explained why when I had been taking that dose with supper I would always nod off just as the tv mystery show was about to reveal the culprit, which doesn't happen now! Take the calcium with a light snack, and about half an hour before you expect to be sleeping.
MalloryMoss - I was in the same boat and, as my body got used to the steroids sleep settled down.
I have been using my Garmin to monitor all the vitals. I’ve found that really useful to understand how the journey is going and how my body reacts. The GP did say that whilst the Pred starts to work quickly, your body will take a while to catch up. For several weeks I was completely shattered and I could measure that. The advice on the forum was rest & don’t rush.
thank you SpaghettiWestern99 thats a great use of my Garmin, I'll start doing that I've also got a HRV App that is very accurate on the state of my health, I've got out of sync with that but will go back to it now.
Welcome to the club that no-one choses to join! I was diagnosed at 59 and was very active. Tennis, golf, horses, gardening so i understand how you may be feeling. It's early days for you and things will improve though it does take time. I derived a lot of benefit by taking my Pred dose at 2am. It doesn't have to be exactly 2am but anytime from 1am will do. There are sound reasons and advantages for doing this. I often wake very early for a bathroom visit so I take my Pred then. You may find it helpful to keep a daily diary of dose, symptoms, activity level. It is a useful tool to refer back to, especially when you reduce your dose or have a flare of symptoms. All the best.
Thank you PMRnewbie 2017, you're so right, I don't want to be here but grateful for the charity and the support. I will try that at some point, I'm hoping its a blip, tonight I've tried hot milk and honey (we keep bees) and hope that may help, but I like the idea of switching the pred to early hours, I'll try anything. I happened to buy a journal when I was in Spain, had no idea what I was going to do with it until I was diagnosed so I've just started documenting my journey, you're right it will be good to keep a note of all the stats as a useful tool.
All the best to you, I have a question for you.... 2017 I take it that is when you got PMR? How are you now?
Yes, September 2017 was when it first started. Took until January 2018 to get a consultant diagnosis who said definitely PMR and possible GCA. My GP and I (I am a Pharmacist) had decided it was PMR and she started me on 25mg because of the headaches. On reflection I reduced too quickly initially because of my steroid knowledge but of course PMR is a whole new kettle of fish when it comes to reducing the dose so I decided I didn't know as much as I thought I did!! I read loads and loads. Started the 2am dosing which was and still is a game changer, but am still on Pred. I got down to 1mg but from 2.5mg downwards didn't realise my leg pain was actually PMR inflammation. I'm now on 3mg and feel great. I have been lucky and continued to walk and play tennis and golf (gave up horses though) throughout my journey. My muscles are weaker but I am regaining strength. I'm now 65, but look a lot younger and just keep going albeit at a more controlled pace!
We have great people on this site who know what they are talking about- through personal experience and many of us can support what we say with medical fact and qualifications. Ask anything you like. Someone will have the answer. Nice to meet you.
thanks PMRnewbie2017, nice to meet you too, really interesting journey and that's how I'm seeing it now, my initial reaction was counting the weeks till I'm free but I've come to realise very quickly that this is a long term journey and I'm coming to terms with this and keep thinking it could be a lot worse, so I'm trying to keep perspective. I took my Granddaughter swimming this morning (I'm also a swimming coach for a local club and this keeps me mentally happy doing what I love) she's a wonderful swimmer and we noticed 2 people get in the pool, one with legs amputed at the knee and one with one arm...and they just cracked on, length after length..... that gave me the perspective I needed today
Hi. Just to say hello and I was 58 when diagnosed too, in Jan this year - definitely nowhere near your fitness level tho! Like many, I would prefer not to be on pred but have accepted it for now as what a difference it has made... I am pain free! Hopefully you are or will be soon too. I started at 15mg, am currently tapering v slowly to 4. My GP is v supportive, and altho she hadn't come across PMRpro's dead slow tapering method below 5mg, is v happy for me to follow it, to listen to my body and see how I go. Having read a lot on here, am definitely not rushing this. Hope you have a helpful GP and hope your sleep patterns settle soon. Good luck with this journey.
Thank you TreesAreGood, I cannot wait for painfree! At the Drs on Friday I was counting the weeks to freedom but since joining this group and reading so much about the condition, I realised I need to take a step at a time, I read a quote in my journal today which is very apt "Look at the step in front of you, not the whole staircase".
Hi MalloryMoss! Welcome to the Club! The good part of your life is that you found this exceptional forum and I will guarantee you get very sensible and fast advice. I had to wander around for six months before I found this forum and it transformed my life mentally as well as physically. As beloved SnazzyD said , you have been slapped in the face with a large salmon. Do read this forum over and over. You learn so much. Family friends and neighbours do not understand this disease or how we feel or react to it. They think you have something wrong, you go to the doctor, they give you pills. You take them and two weeks later you are fine. This dragon is very different. Good days, bad days, weird pain in strange places. But we understand. Any questions? Ask. You think it a silly question, no it isn’t. It is important to you. Keep strong and smile. We will win.
I've always had insomnia with pred. It's like having a search suddenly turned on in your brain in the small hours. I tried lots of practical tricks, but nothing seemed to help, except possible taking the second calcium supplement at bedtime. I would be a shivering wreck by now, but luckily for me, after some months of this, my GP prescribed some low-level sleeping tablets and I take half of one, as necessary. Dependence has not become a problem.
Good luck with it; it's really horrible waking up loudly and realising the clock only says 2 am.🙂
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