This PMR is really hard to get used to. Short history: I first started pred about 6 weeks ago. I was given a super fast taper from 30mg to 0 within 2.5 weeks. I reduced 5 mg every 2 days. I was doing okay until I was at 0 for 5 days and all the pain came back.
After posting here, and getting some advice I decided to go back to 10mg. I did that for 4 days and it made no difference. So then I decided to do the whole thing over again starting at 30 and tapering more slowly.
I did 30mg for 5 days and felt pretty good so went to 25. After 4 days I felt pretty good so I went to 20. That's when I overdid it. I did some bird photography with my heavy camera and my arms started aching again. So I went back to 25. Then my plan became to stay at 25 for a week and then start tapering 2.5mg per week. At that rate I will just barely have enough meds to get me home in 8 weeks time (I travel full time as a photographer).
Yesterday was my 6th day at 25 and I was feeling pretty good. I didn't have any pain on the 5th day at 25, so on the 6th day I thought I could do a tiny thing. I took my super light baby camera outside for 20 minutes. And my arms are aching again. Sigh. It can't weigh more than 2 pounds!
I guess I should be tapering even more slowly but that isn't going to work unless I fly home again or maybe I can beg my dr for a refill by phone and then beg my pharmacist to mail it to me.
Either that or continue with my plan and don't do any activities at all.
This post is just a big whiny complaint isn't it? Sorry. I'm very frustrated at the beginning stages of this and feel like I can't do anything anymore.
So ... how many days do I have to go without any pain at all before I can consider carrying my baby camera for 20 minutes? Or is my career and everything I love in life over now?
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BoaterAnnie
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What happens if you don't increase your dose but simply allow your body to rest? In early days I learned that no matter what I did I had to have an equal amount of rest/downtime to balance the activity. The activity might not be carrying a heavy camera, it could be as simple as an enjoyable time over coffee with friends, or a reasonably long walk (I started this journey quite fit). After several years I automatically factor in the rest time because my belief is that using pred to deal with one day's mistake is counter productive and just makes the next episode of overdoing it (because you will, we all do) more difficult to manage.
But we are all different and what works for me may not work for you. And there will be others along with their own methods of handling this situation.
Well I thought that's what I was doing. Both actually, I increased my dosage and rested for 5 days before I tried doing a small thing. I guess I should have rested longer. Maybe I should wait until I have 4 or 5 days without any pain before I try to do something? I just don't know what that resting time period should be. An equal amount of time seems reasonable, but I actually waited longer than that. Although I did overdo it significantly the first time!
You are really early in your journey. It's the length of time you were active, and the amount of physical effort, to begin with which contributed to the reaction. You can't have business as normal for a day, or maybe even half an hour. not at first. You have a serious systemic illness and it will take time to recover. As I indicate in the other reply I've just made, you may find you manage better with much shorter intervals of activity for the next few seasons. It can be quite alarming how much our lifestyle is restricted, but there does come a time when we find a way to carry on. I have all my life been one who refused to accept things. What PMR has taught me is acceptance and patience. It took me nearly 70 years to get to that point, where some know that lesson from birth! And I certainly wasn't about to accept any restrictions at the beginning of PMR/pred.
Yes, acceptance is going to be a challenge all on its own. I enjoyed reading your story! Although it's overwhelming to realize how early on I am in this journey and how much I have ahead of me to deal with. Thanks for your reply.
On the plus side today I have a doctor's appointment and I'm going to ask for a smaller prescription because I'm now finding my pain and stiffness can be dealt with by a dose of aspirin. Seems like it isn't PMR any more. So, onward and upward! Not sure I'm happy to be so uncomfortable with osteoarthritis, but there it is, and it's better than being disabled by PMR.
Be careful what you wish for. I went from 300x1 mg tablets with four refills (didn't get fourth refill as prescription expired) to 100x1 mg with one refill. Oops!
I've thought I was going into remission before and that wasn't the case. However what may happen upon true remission is leaving PMR pain behind and picking up the osteoarthritis which also had been damped down by pred. So the only real benefit is going to be not having to take pred any more, if that is indeed the case. I don't think I'll feel any better because there's not a single analgesic I would consider taking regularly for OA. Have to accept this new normal.
PS. Thanks for taking the time to reply and for your link to the spoons theory. That was helpful. I guess it is just going to take some time before I figure out how many spoons I have to work with.
Thank you Heron for your point about equalling 'active' time with rest time. Since diagnosis and the start of my life with pred (about 6 months ago) I have been trying SO hard not to 'overdo' things mentally and physically and to get enough sleep - to conserve my energy, both mental and physical. Now I have begun to recognise what activities use up my spoons (some of the mental ones have surprised me) I will try to apply your formula to my plans.
It's great that you have found acceptance and are finding out what your triggers are , and adapting your activity to avoid them . Balance , listening to your body , and learning along the way with patience is really key to having a smoother recovery with this illness, take care , bee xx
I'm afraid my words made me appear for more 'together' than I really am! I wouldn't say that I have 'found acceptance'. By nature I am a very reluctant 'accepter'. In lots of situations, if I think I can see any possibility of my changing something I don't like, I will. I frequently have to talk to myself quite sternly to avoid wasting time and increasing frustration when I'm in that mood. I have probably read too many tales of 'heroes' and 'heroines' who refused to 'accept' and went on to save the day.
There are lots of types of acceptance and the habit you are describing is the same stress/ symptom self management that I do myself.
Always double checking what my ' old Normal ' is trying to get my ' new Normal' to do , and giving myself a good talking to and then sending myself to sit in the corner with a Dunce Hat on and think about what I am doing.
It works , and the things I tell myself off about doing I eventually accept , all be it reluctantly , that it's past me just now.
Logical self management though is really good , positive enforcement with yourself as the Drill Sergeant shouting out the rules.
I like your comment about what your "old normal" is trying to get your "new normal" to do. That's a good way of putting it. Any time I feel a little better, I seem to totally forget PMR is there and try to carry on like the old normal. I'm still getting used to the whole idea.
That's definitely a good plan , especially if you workout how you need people to act and understand then chat about it quietly , honestly and calmly , not obviously stressful mid argument . They do understand , and they do try the best.
Often our family and our "real" friends ( one of the silver linings of PMR is you find out whom they are!) just need us to be honest about how we are, what happens to us , and what we need to do to try to start acting right because they want us to get better.
There is the odd blip , but my OH , or kids even self manage now , if they start an unnecessary rant they see my face , realise and say sorry and calm down, in some ways it's one of the silver linings of this illness , everybody has finally learnt had to be calm with each other and the house is much kinder because of it, hugs , Bee x
I've been slowly asking my friends and family to read "The Spoon Theory" (thank you to another friend on this forum) and it seems to help them understand me and this disease more. It helps me to understand my delicate limitations too.
I wrote a post at New Year listing my sort of contract ( or Mantra) for myself for 2019 which really has helped me keep life and my mind in balance so far , and some other members really liked it too.
If you fancy a read , just click on my icon , and go to my profile page , you'll find it, you may find it can help you too . Every little helps , hugs , Bee xx
Hi Bee, I read your new year's post and just want to tell you how much it means to me. I am really finding all of this so hard to accept. I know I am still trying my best to ignore it (on the days when that is even a tiny bit possible) and that makes it worse the next day. I am going to adopt your resolutions as my own. Thank you so much for that.
Yes if you press on my icon ( or any members ) goes to their profile page , you can choose to follow the person then send them messages , or just press the message sign in the big profile picture links and go from there. Let's you have a chat or ask a question to someone who you know that you might be shy about posting straight off.
Gosh, your comment about stress as a PMR igniter reminds me of the early days after diagnosis when I'd have to stop hubby in his tracks sometimes when he was starting to go on about some political blah blah blah or similar stressor. I learned within a few months that I really had to finally admit I wasn't going to save the world and the best thing I could do as a human being was to live as lightly on the planet as I could, and learn to be kind.
Bravo! I totally agree and have made similar changes in my own life. My new career and lifestyle is all about finding the good things in the world and sharing them, living a good life, and being an example of how you can design your life the way you want it to be.
Of course PMR wasn't in my design. I already had enough health problems between depression, anxiety and back injuries. This is just piling on now! But it's not like that part is a choice. Our choice is only how we deal with our challenges.
Also, I try to limit my time watching the news. It is too stressful and I can't do anything about it anyway. I think I have more of an effect on the world by living a good example.
It doesn't work like that - nor does taking more pred prevent pain. And it isn't that dramatic - you will learn ways around it and it will get better. But you have to be patient.
The pred combats the inflammation that is being caused by an underlying autoimmune disorder that makes your immune system unable to recognise your body as self. As a result it attacks body tissues in error, causing damage to the cells and inflammation. The resulting swelling and inflammation cause pain. Pred relieves that - but the underlying disorder is unaffected by the pred and still continues damaging the body tissues making them intolerant of acute exercise. Exercise isn't just activity - it also includes sustained use of muscles, as you do holding up even a lightweight camera. I couldn't even hold a phone to my ear for long without my biceps screaming at me. I managed by swopping hands and resting my elbow on a pillow. The thought of holding up 2lbs for 20 mins makes my arms tremble!
Can't remember - have you said who suggested the superfast taper? 30mg is a very high starting dose - 20 or even 25mg for a few weeks makes more sense. And then you reduce SLOWLY - down to 15mg you might manage 5mg at a time but you need to stay at the new dose for 3 to 4 weeks each time.
This is no speedy journey - once you have got the inflammation under control you reduce the dose slowly to find the lowest dose that manages the symptoms as well as the starting dose did. But you also usually have to make lifestyle changes and adjust how you do things if you want to carry on doing them. It isn't impossible to continue - but it may mean using a stand for your camera instead of your arms...
So I guess every time I do my photography, it's going to cause damage. I just have to figure out how much of it I can handle without it causing a flare? And then if it does flare up how long I have to wait before I can try again?
I have made significant changes - no hiking, no carrying my camera bag. The birds were just too good of an opportunity. I just carried one camera and one lens, albeit a large one. Tripods help sometimes but it depends on what type of photography I'm doing. It doesn't help for flying birds. Plus it means another 2 pounds to carry. I knew it would be overdoing it, but I decided it was worth it even if I had to rest for 5 days after. But I was surprised that after 5 days, and the pain going away, I couldn't do 2 pounds for 20 minutes without it causing a problem.
I guess like that spoons theory, I haven't figured out how many spoons I have, so I am all surprised and discouraged when I run out.
The adjustment has been hard so far, but I know this is nothing compared to how my summer is going to change. I usually spend all summer boating and photographing marine wildlife. That means handling the boat and carrying my heavy camera at the same time. Right now that seems like it's going to be impossible. It will feel like giving up everything I love. Of course I know I can't do that kind of thing forever. But I'm only 51, I thought I had another 10 years of boating in me.
I think the emotional part is just as hard!
It was my osteopath who suggested starting at 30mg. My regular GP wanted me to start at 50mg!
Thanks for your reply, I really appreciate all the help you have offered.
It won't cause damage as such and it isn't really a flare - just muscle cramp as a result of over stressing the muscles, the same as DOMS (delayed onset muscle soreness) when you have done too much exercise without training and which then takes much longer to resolve than you are used to. By summer you may be in a very different place - although hauling a boat about sounds a bit much. I too was 51 when it started, I had 5 years dealing with it without pred - no pain relief! It did mean a lot of changes and I did lose out badly really.
These may help understand. The first is a medical article aimed at teaching GPs better habits - so yours may well benefit from a read. 50mg is for GCA - really not necessary for PMR. The second is a collection of articles about pacing and living with chronic illness. PMR may only last a couple of years, or it may last a long time. There is no way of knowing. But it can really be lived with fairly well once you get your head around it.
It's interesting that you said it is the same as DOMS because I keep telling my husband it feels like I did a thousand bicep curls and now my arms are exhausted and weigh 50 pounds.
I have thought of a few ways that I can making boating easier, but I haven't decided if I might just take a season off. I'll wait and see how things go over the next couple of months. It is encouraging to think I might be in a different place by then - hopefully an improved place where I have figured out what my limitations are.
Thanks for the links, those are extremely helpful. I have only scanned them so far but will read them in detail now.
Good thing you started at 30, even that is high for "only" PMR. Fifty is a dose for GCA. And Good Grief's comment about the taper is spot on - we are in this for the long haul. As PMRpro told you, we aim for the lowest possible dose which manages the symptoms and after a couple or three or six years the disease goes into remission and we can taper off completely. Managing at the lower doses is easier. Less effect both emotionally and physically, but it takes time to get there. Slow and steady.
See if there are ways you can carry the camera load differently. Use different equipment. Find places closer to home - or at least closer to places where you can rest and recuperate. Decide that for this summer you'll photograph the birds, beasts, insects and vegetation near home. I'm sure you can find a way to have your cake and eat it too, just smaller slices! Good Luck! And do let us know how you get on. We all are seeking solutions and the experience of others is what makes this site so helpful and enjoyable.
Thank you for your encouragement Heron. I wasn't doing very well yesterday! Today the pain is gone (although my arms are still shakey) and I am feeling more like I will find a way through this. With all of your help
What about trying to recruit some student assistants to help you haul equipment and/or handle the boat? Maybe they could be interns getting some class credits for learning photography from you. Or maybe you can afford a stipend for a days work? And I don't know if you have some sort of scouting program in your area, but it sounds to me like you might get some help from a scout looking for some merit badges or special badges (the kind that are like "independent study".) There might also be some folks interested in wildlife/birding/boating who would love to be along on your adventures and give you a hand with equipment and such.
Though I have a desk job, I have a very active 1.5-2 hour New York City commute by bus, ferry, subway and walking at each end of my 10-12 hour day. The only time I've taken off since onset was a couple of days when the ice and/or snow were too much of a threat to my newly unbalanced balance. So a normal daily life is possible even with PMR.
Everyone is different with this condition, although almost everyone on the forum reports there are just some things they can't do as much as they used to, or the same way, or for as long, or at all.
That doesn't mean it's over. It means it's time to get creative.
That is a really good idea! People are often offering to be my assistant, in a joking sort of way, but they probably would love to go out. I always go by myself because I'm a loner and because it's always a last minute thing being so weather dependant. But you're right, there are probably ways that I could get some help. Thank you!
I really do think you need to discuss a proper recovery programme with your Specialist
Pred isn't like Paracetamol , you don't take it like a painkiller after the fact for a few days until the pain wears off it needs to be taken for a reasonable period at a higher dose then slowly tapered down as the illness follows its progress.
PMR is a self limiting disease which burns out in time , but usually over a few years , not months or weeks.
I think you noticed that by tapering quickly to nothing and then finding it popped it's ugly head back up again.
Unfortunately , it takes time and a great deal of patience , time , acceptance and adaption during the course of the illness. The quicker you use these skills , the easier planning and coping with the progress of your PMR will become.
The Spoons Theory does help from day to day , but the steroid dose needs to be at the right level first , and if Fatigue or a Flare of inflammation occurs from overactivity , an infection or stress you have to remember to leave your spoons in the drawer until your are comfortably back on your feet again.
If you do take part in activities you must take regular breaks during them , and not overdo many physical activities , especially in the early days.
If you have a full day , it is best to plan to have a rest day or two afterwards to recover and rebuild your energy.
If you have a stressful day , the rest is equally important because stress will increase your pain and inflammation too.
And if you do something that really causes you physical pain , it is called a trigger , note what it was and avoid it.
It won't take long for you to get past dealing with your new reality for now. You are the same person , it's just you may not be able to do the same things in the same way for awhile.
But if any of us have learned anything along the way it is , not to stress the small stuff
( with PMR nearly everything is the small stuff!!) , and that learning patience is key to helping recovery. The new serenity you find along the road , and the battle you fight has some silver linings though , as it makes you a much stronger , calmer person in the end .
Take care , and keep posting any questions as you get used to the ' new Normal' with PMR , hugs , Bee xx
Hi Bee, thank you very much for your excellent advice. I think you guys on this forum are managing my condition more than anyone right now!! My GP is managing it, but it is made all the more difficult because I travel full time so I'm just trying to get by for the next 8 weeks until I get back to Canada and can see my dr. again.
I know some people probably think I should go home, but I'd really rather be here in sunny southern Arizona, trying to do what I love to do and learning how to get by, than be in the wet cold grey British Columbia. Honestly you guys are a lot more helpful than my dr. anyway!
I love BC in summer, but winters are grey and depressing.
I understand what you mean , just a few unseasonably sunny days here in the UK was enough to make me feel a bit less pain . The weather can have a big effect on your level of pain.
It will be hard dealing with your condition while travelling. Maybe , when you return and discuss admire comprehensive plan with your GP you will be able to plan future trips to fit in blocks between tapers .
I don't know how much Pred you have with you now though , if you have enough in your kit to increase the dose until you get back it may help alot until you see the doctor.
And if you can resist trying plough on without a good rest while you work that will help. We all find balancing little portions of rest between activity in a day is really beneficial. Getting others to understand and do as much if the fetching and carrying so we can get the important stuff done is vital too.
And if you have a full on day or event you really need to take a day to recover and relax , even when you are on the road. And you are in wonderful country ( wish I was there!) So relaxing in all those vistas will be very therapeutic. Unfortunately , you sound like me , my work as a land and nature artist was very physically active, but that has had to be suspended just now until normal service resumes. Let's see if we can keep you on the road , but with a steadier pace.
Eat healthy , drink lots of fluids and top up all those vitamins and minerals , especially Vit A, D,E and K , and Magnesium , Calcium and Zinc . And take Omega 3 it will help with the joint pain.
Lots of info but if you need more PM me anytime. Bee x
The travel isn't as demanding as it probably sounds because I have my home with me since I live in the RV. So I can rest anytime I need to. And my husband already does all the heavy work. With my back, I have never been able to carry more than 20 pounds. And now it's a lot less!
The overseas trips on the other hand are really demanding, but I don't have to do them. I want to, but I don't have to do anything, so I will just not plan any overseas trips until I have a handle on this.
Thanks for all the info! It is a lot, but it is helping. I still have a lot of reading to do with all the links from this post and the book.
Take your time over the reading too , as you say it's alot to get your head around , and you don't want finding out all about your illness to be come one of your stressors too.
I love an RV ! We have a Campervan , and it is a godsend on going on holidays orclong trips with this illness . You can pop off and be comfy in the back , and even sleep through the journey so catch up on that rest as your travelling.
Long journeys overseas are done by people with both GCA and PMR everyday , you only have to see some of the posts on here to see some of the long haul and exotic journeys members have been on ( I am often green with envy) . It will be possible for you too after you have got back to your GP and sorted out a proper drug regime to properly manage your symptoms. And when you go on long trips or find any side effect you can always jump back on here and will get tons of tips from experience , the type of stuff that's often hard to find in books!! Don't give up hope baby , you'll be used to the " New Normal " soon , Everest isn't an impossible dream yet , just maybe a distant one ..... At least that my hope anyway!
Ya, I am certainly getting that impression. I only went home for 10 days so I didn't give the drs very long to make a proper diagnosis. The drs want more tests. So I almost think they gave me that plan to see what would happen and help make the proper diagnosis. I dont know, I'm just guessing. But I called my dr yesterday to give him an update and he said "well at least now we know what we're dealing with". I guess I can't blame them entirely since I didn't give them much time and on my last day there I went back and told them I didn't want to take the nasty pred. I don't think I was being a very reasonable patient!
I can sense your shock and sadness, not at all helped by your very odd medical advice. It might help you to get Kate Gilbert’s book on Polymyalgia Rheumatica. That was of enormous help to me in the disorientating early days of the disease. I believe that you can get it on Amazon. As you have already learned there are knowledgeable and supportive people on this site who will help you on this unexpected journey. With a creative mind like yours, I am convinced that you will find a way to express yourself through photography, no matter what.
Thank you very much for the book recommendation. I did find a kindle version on Amazon and look forward to reading it. I am feeling a bit more positive today and I hope I will find some way forward. There are certainly a lot of options with photography that I could pursue. Thanks for your reply.
Making your necessary adjustments takes time and patience. I was so happy to get pain relief after 5 months I did way to much the first 3 weeks on my starting dose of 20mg. I have learned to slowly build up my activities with adequate rest in between.
As a professional photographer myself for 20 years I can empathize with your quandary. Don’t pack it in just yet. Indeed a tripod may become a necessary part of your process now. And as others have mentioned, slower tapering is a must. Lastly you may consider asking for additional pred as you figure out your necessary dose, so that you won’t be stuck without any while on the road. I carry an extra dose with me at all times, and recently while travelling on vacation, I packed enough for weeks supply just in case.
Hang in there through this learning curve. We are here for you if you need to reach out, and we understand what you are going through during the early days/months. Good for you for attempting to make adjustments accordingly. Keep us updated.
It certainly is a learning curve! I feel like I am going through all the stages of grief here with the denial and anger etc. I guess I am moving towards acceptance and discovering a plan that will work for me. Thanks for your reply, I appreciate it. I contacted my doctor and will hopefully get my pharmacist to mail me more pred so I don't run out before I get home. I thought I had a good enough stash, but that when I thought I would be on 5mg a day at most and hopefully none. Little did I know then...
Indeed I have often written on here about the 5 stages of grief we go through when diagnosed with this AI condition. Denying that we have a chronic illness....it must be something else. Anger over the adjustments we must make in our lives and relationships. Bargaining...if I change my diet, exercise more, etc will it go away. Depression over our new limitations, pain, isolation. Finally acceptance (and with this comes some peace).
I was stuck in anger for quite some time having just gotten married, moved and retired at age 55, this was not the retirement I had planned and dreamed about!! I was depressed because I missed my old life, and abilities, very much. Once I could accept my fate I worked on changing the things I could to better heal (diet, balance of activity and rest). My therapist was invaluable in the early months.
I will say, 10 months after diagnosis I am managing much better, I’ve lost 30 pounds, reduced my blood pressure medication in half, and have managed to reduce from 20 mg down to 9. I also have now have more compassion and don’t take the little gifts for granted.
You will get to a place of peace and acceptance eventually. PMR is in the drivers seat for now, but likely not forever.
Thank you for your insightful comments! It's so nice to be able to get advice from people who are ahead of me on this timeline and not only understand what I am going through, but also where I am going with all this. It is encouraging that you feel so much better after 10 months. I hope it will be the same for me. I can certainly understand how hard this must have been for you when it happened right at the same time you retired. I hope you can get to the retirement you dreamed about soon. I wonder if you'll be another photographer RVing like me? What kind of photography do you do?
I did mainly portraiture, but stopped when digital photography came about (too many self trained amateurs flooded the market). Now I just shoot for pleasure.
Thank you for your kind words! I have a total knee replacement and likely a couple more years with PMR. Then hopefully I’ll live out some of my dreams. Till then I’ll make the needed adjustments and focus on a slow taper and some continued weight loss. Travel is also an option until my surgery time rolls around.
We here in this forum will “get you” better than others who do not have a lived experience if PMR/GCA. Keep us updated.
I have had PMR for nearly three years now,and have had to lower the dose of pred very carefully over that time.l think you tapered far too quickly and the previous posts have given you good advice on tapering .l am stuck on5 mg of pred and this just about manages the PMR.l find that going out one day,shopping or attending a social activity etc,l can feel exhausted the day after and need a day at home to relax and take it easy.l know how frustrating it is for you to not be able to carry your camera without it causing you pain ,and photographing birds and just being out and surrounded with nature is such an enjoyable career,something that can be very therapeutic too.l hope that by pacing yourself and finding something to bear the weight of your equipment you will be able to carry on doing the job that you love.Please keep posting to let us know how you get on.l am fortunate that l am retired and l realise that you may not be able to stay home and rest like l can.ATB.
I am very fortunate to have the lifestyle I have. This is my second career, I've only been doing it for 8 years. My husband and I sold everything (except my boat) and bought an RV and we've been travelling ever since. We both started internet businesses. So it's perfect because even if I can't do photography the same way I have been, I can still travel in the RV and photograph whatever is outside the door. It's the best of both worlds because I get to see things and I get to stay home at the same time! Also, it's a "need less" lifestyle and we can actually live on very little. My business is all on the internet, so I can work when I want to, which will also make a big difference now.
This whole thing would be so much harder if I had a job I had to show up at, especially one that required physical activity.
Sorry that you weren't told to reduce prednisone by 1 mg once a month. My GP reduced my prednisone. by 5 mg and this didn't work, after 1 1/2 years I am finally seeing a Rheumatologist, he has me on this dosage, reduce 1 mg once a month, so far so good. I have my blood checked once a month also.
I do know that you can't rush this crazy disease and most people have never heard of t.
Thanks Donna. It's really good to know what is working for other people. I'm starting to come to terms with the fact that I'm in this for the long haul. Thanks for your reply.
You have received some very good advice from our forum Wise Ones. Read their words again, and then
Stop...think about how you can manage...and develop a plan...
The suggestion of an intern-helper is a brilliant interim solution while your body settles into this new experience.
PMR is not life-threatening, but it is life-altering...(thank you PMRPro)
What that means is you need to develop alternative options for even the daily simple physical challenges...such as lugging about a "baby" camera. The camera, combined with muscle tenseness during a shoot, can all irritate your inflamed muscles.
None of these thoughts are permanent changes for your way of working... or life...but..., for today...and the forseeable future...you are going to need to make changes.
So, listen up...make a plan,,... and get on with it!
You will be fine, but it takes some time..
Keep planning those magnificent "shoots" and they will happen!
Thanks Jerri! All the advice and encouragement I have received here has been so valuable to me. I'm so glad I found this forum!! I would be lost without it. I am still planning my shoots, and taking into account things like carrying less gear and needing more time to rest in between. Thanks for the reply.
Best to spend next 2-3 months adjusting to new normal and finding what you can and cannot do. Also, if you give PMR greater focus, you will probably be able to taper down to 15mg or even 10mg during that period. If I were you, I would still try to take photos, but do it maybe once a week to give plenty time for muscles to rest and at the same time make them stronger gradually. If you were in great shape before PMR, recovery is usually faster, but again it has to be done really slow. I was very active before PMR and with very gradual training I was able to get back to the same level of activities after one year, so it is possible to reclaim your life.
Everyone is different and also there are many variation of PMR ( or how it impacts us). YOU have to find what works for you and what does not. We can help answer your questions, which I am sure will be plenty, but it is up to you to find the way to manage PMR and still do some if not all what you planned to do in your "retirement".
BTW, I do photography myself and know how heavy those big lenses can be :).
Hi Nick, that is very encouraging that you were able to get back to your normal level of activity after a year. That's one big bummer about all of this is that I had been working so hard for the past couple of years to gain some better upper body strength. It took years to build up my tiny little biceps and now I can't do any of my arm exercises so I'm sure they'll be gone soon. I am worried about loosing what little upper body strength I had.
Those muscles are still there, just in pain when you try to use them. If you were in good shape before, then start very slow and maybe every week or 2 increase the intensity. It will all come back, but it takes time. It is very important to start as soon as you can, and be patient. The most difficult are "static" exercise ( like holding camera up and trying to be still), but dynamic moves and stretching is not only possible, but beneficial for recovery. Over time, strength will come back.
I have to say I am really shocked at the number of people who play fast and loose with doses of Prednisolone, I understand pain, I really do. But it is an extremely toxic medication and folk really shouldn't wake up and think to increase by however many mg. if you aren't getting support from Medics demand it
Hello Boater Annie,what a wonderful way of life you have,it sounds really inspiring.l am pleased that you can slow down a bit when needed,and l hope that you will be able to manage your PMR without it restricting you too much.l used to love photography myself,having worked for Kodak many years ago ,there was access to dark rooms there,long before digital cameras and all the new technology.I enjoy painting nature now.Good Luck and best wishes x.
It really is a wonderful way of life. I'm so glad I made the change to this alternative lifestyle. It's coming up on 8 years now! The freedom has also meant that I've been able to be there for my family when they needed me. Being self-employed gives you a lot of freedom, but you have even more when you are location-independent. I love being out in nature and keeping my mind focussed on the good things in the world. Thanks for your reply!
I know what you mean I’m sorely struggling with this , I work full time as a bus driver and at the moment there is no other life I’m to tired to do anything, I get home and do the usual chores and have nothing left over for fun, really feeling fed up , reducing the pred was ok then over Xmas pain back with a vengeance, going to ring doctor later I’ve had little contact since being diagnosed, I like this forum as others are in the same boat and have answers that your doctor doesn’t, I’m sure someone on here will help you out , but I think this desease is an unpredictable sneaky one. Anyway your not the only one wondering if your life is on hold as you know it, keep plodding on an I really hope you feel better soon, bless you and happy new year.
Thanks for your reply Shandkydd. I have come a long way since I posted this - both in acceptance and realizing that when I thought I had reduced my activity level as far as it could go, I was only about a quarter way to what I had to do. Just yesterday I came to the realization that if I have to wash my hair I'm done for the day. It's pretty sad really. I can't even imagine driving a bus for an hour let alone all day for 5 days!!! It takes a long time to make the necessary lifestyle adjustments, but I would rather make the adjustments in the hopes that the disease will run its course faster than always pushing it and ending up having the disease longer. Of course, that's just a theory about how PMR works, but it's a theory that makes sense to me. Good luck!
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Double vision episode
How can I get out of this mess?
Pulled a muscle (Touch Rugby), taking a long time to recover.....normal ? 
