Hello fellow sufferers, this post is partly to confirm that yes, STRESS will cause a bad flare. I was doing well, tapering from 14.5 to 14.original dose started at 15 dec 2017 but having a rough time getting off it. Finally, at 10 days of tapering at .5 I was saying how well I felt yesterday.....cooking etc. Then, stressful situation with an uncaring daughter and her kids. They live miles out of town. Good thing!!! This afternoon my legs and ankles are in agony. Doing all I can....magnesium, tonic water, healthy eating....till today. Couldn't get to store do ate some frozen chilli from freezer. Idk if that was partly it. I'm also type 1 diabetic and trying to get at this tapering as blood sugars are not coming down. Not, using heating pad on ankles. I also have very poor circulation due to diabetes.... I live alone and am so isolated. Don't know if cramps or the PMR causing all this pain or due to tapering. I can't take it. Any suggestions?. I'm taking magnesium, vit c , bit d, calcium, tonic water, multi ....can't remember all. Have heating pad on ankles now....maybe I'm taking too many supplements. Thank you all, just getting this stress off my chest helps
Maggie
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Hey Maggie, sorry you're having such a tough time of it.
I'd be using cold on those ankles to get the swelling down, and elevating those legs. Gel packs are great for this. If you don't have any on hand, bags of frozen vegetables are a good substitute. Failing that, ice in a zip lock plastic bag wrapped in a dish towel will do.
Thank you for replying, ankles weren't swollen as so much as cramped and stiff and to the top of my feet. That finally calmed down then all night I suffered with severe chest pain....front and back. No, I didn't call ambulance as I'm so fed up I thought oh well, what will be will be. I'll use ice on the ankles next time. I'm supposed to keep legs elevated anyway but I can only do so much.
I know it seems counter-intuitive, but often we can't see what's actually "swollen". Just because your ankles/feet aren't puffy doesn't mean there's noting going on in there that we can't see that's putting pressure on nerves etc. Last spring/summer I had a lot of problems with my feet, and cooling the area always helped some.
Chest pains could be anything from gas to anxiety to real trouble. Call for help when you're worried. Better to find out it's nothing much than to suffer the consequences of something bigger.
Your job now is to take good care of yourself, and flush anyone who can't or won't get behind that. You can't make other people do the things they should, but you can make yourself do what you should. Don't punish yourself for other people's shortcomings. Don't waste your time and energy on them.
You have more important, and effective, things to do for yourself.
BTW: For those times when getting out to the store is difficult, do you not have grocery delivery in your area?
Could you maybe ask a friend or neighbor for a weekly breakfast or lunch combined with a trip to the market together? Is there a young mother in the neighborhood who would be willing to pick up a few things for you when she shops in exchange for you sitting for the little one while she's gone? Maybe some gentleman who'd take you, or go for you, in exchange for some healthy home-cooked freezer fodder?
Sometimes we have to get creative to ease our problems. And sometimes we can be the solution to someone else's. We all need help sometimes, and we can made things better for ourselves and others when we work together.
Your response makes such good sense in a perfect world. I live alone in a tiny cramped apt. packed with my life's belongings. I can't go on much longer, it needs clearing out and I need to go somewhere where there's help.
I have a daughter who lives far away and just refused to help.....too far!! We don't get along anyway. I don't have any friends or family left in this small town. They've either moved to the city or passed away. Truly, I have nobody. I would love to cook and do for others as my health allows but there isn't anybody.
Isolation has basically caused more anxiety. I've lived in this complex for 25 years and it's gone from a friendly fun place to live to newcomers who just keep to themselves and with some of them I'd prefer they did. Sorry, I am so negative but it's how it is. Lovely tourist town on the lake and said daughter used to visit after her sister died but now we're basically estranged.
My names on a waiting list for a friendly visitor program but like everything else in the area, it's been a 2 year wait.
I need help to empty this place and I've considered calling a company on line that does these things for a cost. I just can't face it. This stress is definitely adding to my pain and poor health. I'm also type 1 diabetic etc. Thank you for your sensible reply, it all makes sense but I think I'm just overwhelmed at this point and coming across as a whiney old woman. Sorry 😐
I will try and follow your advice, it makes so much sense. Thank you 🌷
I understand how you feel. Mark & I have lost a number of friends and family members in the last few years, and even our very large circle is being diminished by time, and at an accelerating rate.
Is there a senior citizens center or group in your community? They might be able to help you tap into local resources for some services that may be free or available at a modest cost.
Just remember that some of those folks around you are just like you - overwhelmed and keeping to themselves. As we well know, just because we look Ok doesn't mean all is well in our world. Other people aren't any different. Everyone is struggling with something. If you have the courage to reach out, they might find the courage to reach back.
Thank you but I've tried. These new people that have moved into this community are "differen" I'm not being judgemental but a lot are the age of my ...great grandchildren! Many times I've struggled trying to bring things in and have reached out and asked if I see someone....it's usually no, have a sore back. Most are on disability or something. Wow, I've been having temple pain today, just on one side. Thank you for your suggestions but this is a tourist town and not really geared to seniors I should have made other arrangements before now. Going to explore GCA now.
Hi maggie. Yep, stress is a bugger, and children can trigger some monumental reactions.
I am sorry you are having to deal with these issues, and PMR too.
I suggest a nice glass of wine or cocktail, and put your feet Up With an ice bag and a silly movie.
Know this difficulty will pass, and you will be fine. The kids will eventually come to their senses, but you have no Control over what they do.
I try To remember the Serenity prayer...grant me the serenity to accept the things I cannot change, the courage to change the things I can....and the wisdom to know the difference....
Yep, this is an over 50 kid.....not a child. Haven't seen her in 3 years. I need somebody now but it's not happening. Yes, the serenity prayer is a favourite but I was so stressed I couldn't think of anything. Then suffered most of night with chest pains...front and back. Didn't call ambulance just suffered through. I'm really fed up now with this PMR.....it's inexplainable to people unless they're familiar with it so basically just suffer in silence. Of course my puffy face blends the wrinkles so according to them I look healthy. Ankles have settled down this morning I'm just pretty depressed due to the isolation. Thanks for replying
Sorry things are a trial. Retreat and look after yourself.
Perhaps in the current circumstances your taper is a bit fast?
Just a thought on diet. You say you are on a healthy diet but are you on a low carb diet? Tonic water contains sugar and/or sweeteners, is there a reason why you use it?
Are your feet and ankles painful from swelling or is it joints or muscles?
Yes, I think the taper is fast but dr only looks at bloodwork and not how I feel. Says it's psychological!!!!! Therefore, I did as he said. I should have gone another couple of weeks on 14.5 instead of dropping more so soon. Ankles were stiff, joints and muscles and not swollen. I'm not on a diet exactly just been eating healthier. Craving all kinds of healthy foods that I never ate before. I'm staying off inflammatory foods too.....well I was. I didn't get to the store yesterday so was low on good food. I drink the tonic water mixed with something called CALM for the magnesium and it's been helping the cramps. I buy the diet one. Plus I take magnesium supplements plus others. I see now how stress plays a big part as I was feeling a bit better till everything came piling on top of me and no results in sight. Thank you for responding. Anlkles are a bit better, I think if I move about it will help. Now they're just stiff not as painful. I never know if it's the PMR or my poor circulation ...probably a combination of both.
Have you been advised to cut carbs drastically? That should help some with the diabetes problem. The American Diabetes Association do approve.
And really - chest pains means you need to call an ambulance. However much you can't be bothered or how fed up you feel.
If she is over 50 - she can't blame you for her problems - she has had plenty of time to sort herself out whoever's fault she thinks it is. Mercifully mine lives in another country - but a 3 day visit is enough to drive me to drink!!!!!
No, I haven't been advised to do anything diet wise...just what I read. I need carbs as I take insulin. She feels she has her life and I can just struggle alone. We don't get on anyway, she can stay put. Different story when she or her kids need though. Yes, not the first chest pains event, I do suffer from anxiety and with all going on lately not surprised. I should have called but am fine this time. Haven't seen her in 3 years and probably won't again. Fine by me. My eldest girl was killed in 08 and miss her terribly, she was my support. Thank you for responding, better move a bit.
Less carbs equals less insulin - you look at it the other way round! In the UK they have started advising low carb diets to reduce the amount of medication required.
I echo Pmrpro...my 50 yo daughter went into a tailspin when her brother died in Sept. she was so angry and nasty with me that I began to fear I had lost both children when my son died. The whole thing flipped me into a huge crisis/PMR flare, with consequence of returning to 10 mg pred (had been at 1.5)
Long story short, I have come to realize that mothers and daughters often have love/hate relationship, Not the fault of either but surely resulting in massive test of the relationship. My daughter actually blocked my calls and essentially shunned me for 8 months. It was only mothers day that she finally apologized. I am not sure I can get past nasty treatment of me...and fear our relationship has been irreparably damaged(destroyed??).
Anyway, I Feel sorry that you are struggling...PMR is not very tolerant of this kind of stress... this forum is a wonderfully supportive place where you can share your challenges and find support and advice from those of us who understand this unique and frustratingly life-changing disorder.
I send you a giant virtual hug💜💜💜, things will get better, ...just focus on Maggie and let the other take care of itself!!
I didn't honestly think anyone had as dysfunctional family as I do. Thank you for your kind words. This one is so hateful, there will never be an apology. It's the same....love hate relationship. She used to come here to the beach after her sister died for a week in summer but then, when I became unwell it stopped. We never got along anyway. She just used it to bring a friend for a holiday. Was a free holiday for her and friends and I certainly didn't mind but I was used. Now I need somebody nobody visits. Oh, just whining now ankles hurting again and have to get out yo the store. We won't have a relationship again....it's done. Oh, she sent flowers on Mother's Day but sure wasn't feeling the love. She had reasons for the odd card or making sure she acts like some kind of legal daughter...oh, don't know what I'm saying. There's another daughter that estranged herself from everyone right after Liz died...such a looong pathetic story that I couldn't possibly explain. I really appreciated your kind reply and I send you virtual hugs back and I hank you for understanding.
Oh, I forgot to mention that sometimes I sit with my feet in kiddy pool, bath tub, etc, filled with cold water... helps the hot swollen feet feel better...also some of the cooling gels are nice rub for feet and seem to cool my whole body when its hot outside.
💜💜
Hi Maggie
It's sounds like a traumatic time. Please don't lay there with chest pains again. It could have been anxiety/panic attack but it could have been heart so be kinder to yourself and get help if it happens again.
You probably know more about diabetes and insulin if you are type 1. I have been type2 for 18years and only had to start insulin a year ago because of pred. Almost a year of hba1c at 114 has left me with painful neuropathy in my feet (I had to beg for insulin). It has improved a bit since my hba1c down at 60s. I have found that a low carb diet has helped enormously. Obviously type1 and 2 are very different in terms of insulin, but I adjust my insulin based on pre meal test and intended carbs. I was on 30units at first but on 18-22 as I have reduced carbs as recommended here and by diabetes nurse. I also lurk in a diabetes UK forum for type 1 and 2 and low carb is the main discussion.i do recognise a fear of hypos if you don't get enough food/carb to balance the insulin but every bit helps. It stops me getting those hyperglycaemic symptoms that are horrid - pain fatigue blurred vision palpatations etc.
Re feet. I have 3 things that I used for that horrid foot pain. As purplecrow says...a cold footbath is great. The second is hanging them off the side of the bed. Sounds counter intuitive but helps me. And finally I try and moisturise with foot foam that is aimed at diabetics. Whether it's the rubbing or the foam I don't know but it helps. Sometimes all I can do is fill a pair of bed socks with foam and stick my feet in for a while. I hope you start to feel a bit better soon 🌻🌻🌻
Have you seen a vascular surgeon about the foot pain? Relief of foot pain that you can achieve by hanging your feet out of the bed is often a symptom of peripheral vascular disease - and as a poorly controlled diabetic in the past you are at an increased risk of that. Whether they can do anything to help is another matter - but it does need checking and monitoring.
Yes the diabetic nurse is monitoring it and we will see if it gets bad again. It has improved since blood sugar controlled but I can sometimes feel it. It was creeping above calves pre insulin but seems to be just in inner ankle now. I have kept it to myself that my big toe and the one next to it can start to turn blue if I am really cold. I can rub them back to normal at the moment. I will be discussing it with the Dr next time. I am sitting here with bedsocks on my feet(?) And a fan on my upper body. I was hoping to get through one year without adding yet another issue to the list. Nearly made it half way!!
Yes, dr. says I have venous insufficiency . I just remembered that. By the way, I don't have a memory I know preds can be to blame but there are other things I, with my anxiety fret about.... please let this be a better night. 🚑
Yes, it was on my "list" of appts. Was a 4 hour drive and had to cancel last year as I couldn't sit and didn't know why.....find out months later was undiagnosed PMR!!!! Now, I don't know if I can get another referral. I've had the Doppler and wasn't good. Delay is cos this dr didn't send a referral when asked. Oh, it's so frustrating. I showed my chiropodist the results and she said it was critical. See what I'm dealing with???
Yes, I know I'm an idiot for ignoring such pain, thing is it went on most of the night and no relief. I think I was to such a point of depression that I didn't care.
Yes, I have neuropathy. Well a lot of complications from that horrible disease. Barely a pulse in my legs due to poor circulation.
It sounds like your insulin is measured differently to here, I'm not sure. My aic was relly high at 9 or 10 but now because I'm on the verge of losing my vision I also have an eye condition called DME diabetic macula edema. Caused by retinopathy I've really been trying hard and its down to 8.6.%
I take a long acting insulin once a day in the morning but also take a fast acting according to my sliding scale with meals or just whenever it's needed. A lot of testing and tweaking. I'm terrified of the lows especially when I'm out. Plus living alone they're worrisome during the night.
I've had to increase insulin drastically since prednisone.....I think I did about 50%.
I was diagnosed with juvenile diabetes at age 40!!! Of course I wasn't very vigilant as I felt well. I continued to eat my kit kats, drink wine and smoke. All that has now stopped. PMR diagnosed just after my 70th bday.
It's a rough road as you'll know between juggling the diabetes plus PMR.
I'm not really concerned about carbs as can just increase insulin. I do need to eat more protein though as losing muscle. Wondering if that's causing this pain and stiffness in ankles. They're not swollen....just stiff and crampy.
Thank you do much for responding and the ankle suggestions poopadoop. Thinking I may be a bit dehydrated, hard to say. It's all trial and error here but I may slow the tapering down a bit if I continue to suffer. He's not the one dealing with it. Says a .5 taper is too slow. Well it went well the first time so, if this keeps on I'll drop again.
Yes, we know that...my dr who I had forever retired and this one hasn't a clue about PMR he's very young and not experienced....he says it's psychological!!!' Well, I know different! ....if I get through till I see him again I'll be letting him know that I'm not tapering any faster, I know my body. Bad enough we gave to suffer but then a dr who doesn't empathize......ugh says he's worrying about my bones....really!!! at this age. Does he really think I'll last long enough to get off this med with everything else that's wrong with me...sorry, kinda vented there. Sorry!!!
😂😂😂 good rant. It's is hard to find the right Dr. I was seen by a young rheumy and was shocked when he told me to taper as slow as I needed to. It took lots of stress away and if they realised that it would help!
He is just a gp.....lucky to have any dr here in this small town....yes, I have peripheral artery disease and all the rest and he's worrying about my bones!!!!! ...and a 5 taper.!!!! He's learning from me. It seems not many doctors know much about this. PMR.....I was diagnosed at emerg in December by another dr.
Sorry I'm so late seeing this post. I see people have had a lot of suggestions. I think your daughter's visit did you no good at all. Hope you are feeling better now that it's a few days ago. Are there any agencies which can help you, as you say there are really no friends or family? Can you start with a local church? Even if you have not been a churchgoer there is no reason why you shouldn't receive some sort of support from one. Perhaps they have knowledge of some agency or other which can give you the help you need. Since retirement I've gone through a phase of feeling desperately lonely. But I make a point of chatting with whomever I can. The person beside me in the line up at the supermarket, the cashier at the pharmacy, that sort of thing. I go to library programs (they are free and convenient for me to get to) and try to keep active. It's sometimes an effort but the payoff is worth it.
Please try to avoid getting someone off the internet to help you with your clear out and move. My stepmother had to clear out her apartment and she hired someone who actually went to the same church she did. It turned out to a be a match made in heaven and eventually this woman became a friend and even her power of attorney when it came to medical matters (I live a couple of thousand miles away from where my stepmother was then so would have been useless for that).
Young doctors have a lot to learn. You can help educate this one. But I agree with PMRpro, that it might be a good thing to do what you can to help your health situation; modifying the diet may do more than regulating your blood sugar, it could really help your mood and lead to more energy, or at least a lifting of the clouds. Get the doctor on your side by telling him how you are trying to live healthily, at the same time as you tell him your PMR is definitely not psychosomatic!
Don't think about how much you have to do. One step at a time. Maybe the first step is to call an agency or a church, or someone you know whom you trust even though they aren't a close friend. Or maybe even that young doctor? And all the best - please keep telling us how you are. We care. ❤
Hi Maggie. I am so sorry you are having such a tough time and feeling so isolated. I don’t know whereabouts you are in the US but in addition to this forum I am also a member of a Polymyalgia Rheumatica group on Facebook where there seems to be a huge number of members who are in the States so I am wondering if there just might be someone on there who is near you with whom you could meet up for mutual support. Just a thought but you never know! I hate the thought of you feeling so alone. Sending you much love and virtual hugs, Susy xx
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