I have just come back from my sons home . We spent 4 days with him and his family. Yesterday he decided to lecture me on whether I really knew what I was doing re my PMR. He launched into ….are you following the doctors advice to drinking milk is very unhealthy for me plus other things. Having the occasional biscuit when hungry is the wrong attitude. Tried to say low carbs not NO carbs but he wouldn’t have it.
I have come home really unhappy that he made such a thing about the illness. When I said it’s a disease that affects mainly white womens more so Scandinavian women he virtually called me racist.
That’s my Christmas for you.
Did enjoy most of it tho. Seeing the grandchildren.
Rant over
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Suffererc
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Give him my details,I have a bridge to sell.😂Not the best Xmas for you really but at least you have the real experts to talk to on this forum,I have yet to read one negative comment about PMRGCA so the records speak for themselves. Who knows what inner devils he may be fighting.😱
If you can, try to let it go. We all have incidents like this in families. I used to think I had to put everything right, I now just let things go. I think my adult kids still occasionally want to demonstrate that they know best. Even if in some instances I disagree, letting it go over my head has proved to be the best policy. Don’t brood on it whatever you do. He’s wrong, you know, we know, just let it lie.Families eh? Your Christmas was the grandchildren and they will do this to him one day.
It does sound like a clumsy way to express concern for you. I have been lectured about steroids, I just said “ I know, I am so keen to be done with them”. That ended it. X
Woke is one thing - denying facts is another! Not you that's racist - it is the PMR!!!
I have been accused in the past by a troll of scamming on the patient.info forum. Maybe he'd like to explain where I make my money - I must be missing out on something! We don't sell anything. But please - if he has access to medical research we and Prof Mackie don't, do please tell us.
Just laugh about it - I know how upsetting it is but neither he nor you can change anything. He thinks he is right - we KNOW we are right.
That's such a shame, but as Sheffield Jane has said.... it seems like a misguided way of showing concern.
I know many of us here will have encountered similar at some point. PMR is so hard to explain to those who don't suffer from it and frequently we are thought to be either faking or imagining a lot of our issues!
Other people... particularly those close to us.......regularly think they know better than we do and sometimes their words can be hurtful, frustrating and occasionally even harmful, but again as SJ said... hear it, and then let it go.
You know this is a legitimate forum with knowledgeable, informed people, but even if many of them didn't have the medical credentials that they do...... a group of people on a forum who are living with the condition are going to be far more clued up than a relative who isn't living with it!
Focus on what's important, and that's you and how you want to manage your condition......oh!..... and your lovely grandchildren!
Hi Suffererc. Please take notice of the replies that you are receiving to your post and try to let his comments go!
I have experienced people like this too who try to tell you how to manage this illness and how steroids are really bad for you - in fact I have just had this conversation with my sister only five minutes ago! It is upsetting when it is a close family member who you love dearly.
My sisters advice was that I should ditch the awful steroids altogether and ask the doctor for something less toxic. Oh yes and I should stop lying in bed so much resting and take up more exercise.....! So I am going stop them altogether tomorrow and take up running 🏃♀️ 🏃♂️ 🏃♀️ 🤣🤣🤧! She means well I know. I only hope that our family members don't go on to develop the condition if it is indeed a hereditary condition 🙏!
ah see - she knows all about it - - we only take those steroids and lay around out of choice don't we!?? - we really should just pull ourselves together. . . I WISH!!!!
Your comment made me feel so much better. I was having difficulty getting out of a friends car last week and she asked me why I was struggling? After explaining about the PMR she said “ Oh yes! I know what you mean. I usually put one of those heat patches on and the pain is gone within minutes!!” I just said “Thankyou” in a kindly way and carried on.
It is really difficult to get people to understand PMR and it’s affect on your body, isn’t it ? As I’ve of the comments put it Di they mage a body patch??? I think that our mental strength is tested with this disease but we have to learn patience too. I’m glad I’m not the only one who had this advice. Thank you. 🌸
Thanks for the reply, people don’t seem to realise that it’s not sympathy we’re after but sometimes just to talk about how we feel, mostly in an effort to make sense of it ourselves and not feel so alone. X
Don’t feel too bad. I know it hurts when someone you love doesn’t understand but I actually had a doctor who told me I had to get off prednisone ASAP. When I told her I couldn’t she went on to tell me how to how to do it in one week. This was a vascular surgeon so she wasn’t exactly a dummy.
It’s difficult when we are suffering and everyone else thinks they know what we should do
An acquaintance (friend of a friend) said recently to me "why don't you look into plant-based, natural remedies". It took a lot of will-power not to slap her😲
Goodness me, what a downer. Maybe he had something/someone he needed to let off steam about/to and as is often the case “good old mum” got it instead.
Maybe show him your post and the responses here? And as has already been said please PLEASE tell us all what we can take to cure (cure? …that would be nice) this disease.
Mind you if he feels qualified to say this forum is for scammers one would hope he looks at it anyway so why hasn’t he told us all about this amazing cure?
Oh dear, yet another poor soul here who has been harangued by a relative on their apparent lax or misguided attitude to getting well. It isn’t clear whether it is based on genuine concern or the discomfort of being troubled to worry about an issue won’t conveniently go away. Some people really can’t cope when the parent is not the indestructible pillar of strength like it can seem when one is a child. It guess it depends on what this illness in you represents to him as I bet it’s nothing to do with anything really rational. If it was it wouldn’t have taken the form of an ill-timed, confrontational Christmas lecture.
I’m glad you had the grandchildren to take the edge off it. Christmas can be such a weird time, it’ll soon be spring!
I wonder why he took that attitude. Does he know anything about PMR? I wonder where he got his information from, it sounds almost made up and not based on any sort of medical information.
I know and I appreciate the difficulty, but Suffererc or anyone else could ask the ‘offender’ to cast their eye over some of it-that’s why it’s there, after all. If the scepticism remains then at least there has been an attempt to educate. 🤔
Just let it go and chalk it up to him being a young parent. Now that he is a Daddy, he thinks he has to be the know it all and point out actions that we all engage in once in a while that are not good for us. I think a lot of us go through that stage until our own kids become teenagers and swiftly knock us down a peg or two. When I was a young mom, I remember having a discussion with my mom, one time, for not taking her statin medicine because she said that it made her have so much muscle pain. Her doctor basically told her it was not real pain that she was imagining it. I know that she was not a hypochondriac, or attention/pity seeker, so I let it go and never said another word about it. I am so glad I did as over time I have read so much about statins that backs her up in her decision. Maybe your son needs time to learn about PMR and also to be humbled from his teenagers who will question everything and think that he knows nothing. I am sure he just cares and wants you to be better.
Feel bad for you. Why do people think we take steroids for fun. Not like they put you in a good mood!! Maybe he meant well but went about it the whole wrong way. Lots of us have had times when you sre just speechless and hurt. Stay strong! Best wishes.
I think most people can't see how are disease affects us They don't know how we try to get better everyday.How disappointed we are when we relapse.The pain suffering and the lack of physical abilities.My children never talk to me about how I feel cause they put it down to old age.Some of us got this horrible disease young and it has aged us.I would ignore what your son says because we as mom's like to keep the peace.Just hurts though I know.
Are you sure he's your son 🤔 and not a son from another mother? Because he sounds like mine. Just kidding but I'm sorry for you. Their comments are rude and disrespectful, and difficult especially when we have days we're just trying to make it through. I hope the New Year is better for you.
I understand how you feel. As far as I know milk is OK but cut back on sugar. Yes PMR is inherited from Scandinavian ancestors - probably the Vikings spread its gene!
I have a “know it all son” who gets his medical information fed to him ad nauseum from close friend, a barely qualified male nurse. Not only re my health but his mental health.
He has told my son I should not be on Prednisolone for more than a few months plus a myriad of other nonsense re diet etc. Prednisolone is the only solution to PMR- otherwise it is a wheelchair and painkillers for me. Rheumatologists are the only advisors qualified to advise on matters PMR.
Same Guru male nurse shifted his invalid mother who lived on the east coast of New Zealand to a nursing home away from her friends to the west coast. He lives in Australia! 😢 Sad for her. Relief for him.
I am worried about the future implications of this pattern.
Enjoy your Grandchildren. With some things in life you have to bite your tongue and not argue back and enjoy the positives instead.
My son won’t change, your son won’t change - they will always think they know best! Just ignore it.
I have a degree he has not but I let it go over my head. Good luck.
What you state is great! But, as a point of reference...milk does contain milk sugars and the body really does respond to those. I eat a keto diet and use limited amounts of heavy whipping cream...when doing any cooking which asks for milk, I just use half water/half HWC instead. It is not zero carbs but lower than milk...interestingly enough, the lower the milk fat the higher the carbs in milk...I personally ate a few things over the holidays that I should not have and have paid the price...I am now trying to eat only the things that agree with this condition...the pain seems to be getting better...lessons learned. Kids are an interesting mixture, aren't they?
I am sorry for you. It is better to have our childrens support. I sounds as if he is feeling powerless and falls into just giving any advice to "help" and then take his frustration out on you too. So it comes from concern. Just tell him that you follow the international doctors and guidelines advice and that it will go away by it self, but while you wait pred. is the only thing that gives relief. I think that he is confusing this fantastic forum whith the many forums on Facegroup where ecco chambers build up and lots of trolds and mentally ill people are online. This forum is so well administered and so professional.
So let it go - pretend he was 5 years old when all that came out (he was) - Happy New Year!
Sorry to hear of your experience over Christmas. You really didn't need that one. Pity he didn't stop too think that the stress he was giving you could adversely affect the PMR. When l first had my GCA diagnosis l couldn't get my sister to accept or understand why l was keeping away from my mother who was in a nursing home and the rest of the family. It was early on in the pandemic and my steroid dose was very high. The family still don't really get it three years on and sometimes do things like ignore texts and emails if l haven't done what they think l should be doing. Fingers crossed for them all that they are never in our situation.
IMHO, it’s the most painful when it comes from an adult child. He’s probably covering up his own anxieties about PMR and takes it out on you, in this hurtful way. I join the chorus of the others encouraging you to try to let it go. A tough go but hopefully there will be other good times in the family, especially with and because of the grandkids. Happy New Year!
It does show concern although misdirected which is better than total indifference!!! Heyho! Happy Christmas! You know I do think there is a case for a short (must remember attention span) article for relatives and friends explaining PMR. The ones I have seen so far have been too long winded and understated.
There is a link to a 3-part video of a DVD that was produced by the NE of England charity and healthcare professionals to explain the effects PMR has on us.
Concern level of nearest & dearest... not very high IMHO. And who can blame them! Until you experience something in your own body/mind, it's very hard not to minimise the effects on the person suffering in front of you or not to put it all down to the whole psychosomatic thing. When you're healthy in mind and body, it is so easy to discount the "ailments" of others, especially those of an older generation. I am under absolutely no illusion that anyone around me will take the time to read any links, literature or watch any DVDs mentioned here. If I ask myself honestly, I probably wouldn't have either before I was hit with this.
The support of fellow sufferers is invaluable because they KNOW what it's like and can inform future conversations with health carers who might not be quite as clued up as they would like to think.
I would say Dochaz comment is exactly as it is and I think as it should be. You don’t want sympathy and special treatment you want understanding as to why you can’t do things as you used to or as to why you don’t feel able to commit to certain plans and why you are a bit fatter etc etc!! Having a quick objective paragraph or two would some how makes me feel less pathetic!! I’m sure others might feel so too.
I did find PMR My Pretty Miserable Reality and forwarded it to my three children. I though it as good as anything. It could be read quickly or more comprehensively. It did explain to my son why I was not quite sure about traveling to California this year - to be useful! (look after grandchildren). I explained I would love to come but would have to see how this year unfolded. Last year got off to a bad start and stayed that way! The other son has not bothered to read it - as yet and my daughter is convinced special diets and exercises will help!! 😀 She is lining them up! Luckily she is very very busy.
That is why I linked the video - that is why it was made. But believe me - all sorts of approaches have been tried. The cartoon HeronNS has mentioned is very good unless someone feels it is exaggerated. I personally am not keen as I feel it is very depressing for the PATIENT as there are no indications of the better things, and there are some. But that's me.
Yes! I agree but hopefully it will do no harm to nearest and dearest. I wait to see. I have down played it until now but I really needed to explain why I could not commit to helping as I would have. That it was not that I did not want to and was making excuses.
Wasn't there a sort of comic-book version posted on here a couple of years ago which described how we feel in a very accessible way? It might be more appropriate for people with the disease than other's, can't remember.
Found it - thanks to MrsNails FAQ project - find it under "For family and friends".
Oh dear, our children do like to think they know best and think we haven't a clue about anything and forget we have lived and experienced so much more than them already! I do sympathise with you, try to let it go and have a Happy New Year 😉
agree. My son had a full time nanny with his two girls and says to me ‘you don’t understand how hard it is to bring up children’. Don’t know where he thinks he came from !!!!! 😂🤣😂🤣😂
My family’s impression of the illness has been strange. After commiserating with the initial stages of PMR, my sister said she didn’t think I’d got it. I was so brainwashed that I actually asked the rheumi whether he was sure and received a growl in response. The latest one is that she has come across a woman with PMR, with 2 brothers with the same disorder and they only take a few steroids now and have never had any problems. My sister has also taken prednisolone for asthma and says she has never had any side effects. She said she thought she was cheering me up by telling me all this. I never used to refer to PMR much, but now don’t refer to it at all. Luckily my husband has always been understanding.
My sister is otherwise, a lovely person to speak to.
Doesn't it just irritate the hell out of you when you feel the balance of power shifting from fully qualified parent (as was) to child (still apprenticing). I haven't yet had the wagging finger about my medication, diet, etc., but months before my GCA/PMR diagnosis when I had trouble getting out of bed, barely functioning, my daughter did try to convince me not to waste the doctor's time, that it was all in my head 'empty nest syndrome', and she even sent me flowers, wine & chocs to lift my mood. Far from cheering me up, it got me even more frustrated. Good job we can still love them.😟
Your hurt comes through in your message. Your son probably felt that he was giving you good advice without knowing much about what you are going through. That would have been hard to take from someone you are hardly knew, let alone a much loved member of your family. Hang on in there. Sheffield Jane's advice below, to dwell on the love of your grandchildren and the time you spent with them, and let the rest go over your head is sound. Here's to a happy and peaceful new year to you. God Bless,
Sounds horrible and no you should stick to your guns and do what you think is right. Difficult to justify his behaviour, but I suppose it means he cares and is worried about you? Glad you had a good time on balance. Christmas can be difficult to get through
If I had £1 for everyone's "good" advice, unsolicited by me, over the last 6 years, i would be a rich woman. Except I wouldn't as I would have spent my money on quackery!
This site has the gold standard suggestions for dealing with pmr in my experience and my GP and Rheumatologist agree whatsmore!
Let that s*** go is the best advice I can give as I swirl around in my best Elsa gown 😊 😂😂😂
Unless people have personal experience I don't think they fully understand. Even the practice nurse at our surgery told me not to take any notice of advice on this forum. So far this week, my husband has told me I'm taking far too many tablets, I remind him they are all prescribed and my elder daughter has recommended that I consult her kinesiologist who will be able to treat me remotely via Zoom! It's been difficult as elder daughter. her husband and grandson are visiting for 10 days over Christmas and New Year and I haven't had the energy to go out every day. I didn't see them at all yesterday as I felt in need of a rest. It' s not surprising that my blood pressure is up, I have an appointment later today for a blood pressure check, been on amlopodine for about a month and nowhere near the cardiologist's target of 130/80.
we made them like it. Giving them the best life we could afford. Now they think everything comes easy and lack a bit of true caring 😊. Keep smiling but look after ‘you’
A well meaning friend recommended her kinesiologist, who apparently did a DNA test(!) on her, and "diagnosed" that her ME is caused by gut issues. She's now on a weird and not so wonderful diet. (And, I suspect, quite a bit poorer!) Is she any better? Not yet.....! I politely ignored the recommendation.
Thank you for your reply, which confirmed my own thoughts to decline the suggestion. Daughter, who has fibromyalgia, is convinced it works for her, she "consults" this person every few weeks, at great expense, and also has a very restricted diet, which is a nightmare when she visits as she believes she is "allergic" or "intolerant" to any normal foods like bread, potatoes, pasta and dairy which must not come into contact with any of her food.
😓People can be so insensitive.....But it usually is something else bothering the person with an attitude....I hope your Christmas wasn't completely spoiled.🙏
Thankyou. But no not completely spoiled. It is the folk who rattle on about diversity but don’t include disability. They are quite prepared to throw money at a cause as long as it is not on their doorstep.
God, I feel for you, though I realise now that your 'rant' has helped, as has the support on this forum (scammers though we are)!! I have received similar hurt at Christmas in the past and I know how it can get to you. You're wise to let it out though because internalising this sort of pain, can make things worse imo. When similar happened to me it did make me reflect on my own attitude to my Mother at times. What goes around, comes around, as they say, and your son may realise this in years to come with his own children!
There's some excellent supportive advice here re your experience, so keep going Suffererc and it will pass - it is already by the sound of it👏 Very best wishes to everyone for 2023.
I am sorry you had to experience this with your son. I have found that the less I tell my children about dealing with PMR or any other condition I am dealing with, the better. They are in their early 50's and have families of their own. I don't know your son, but he may have good intentions even though he is hurting you by speaking as he did. As long as you have friends and other family members you can talk to, and this forum which is so helpful and a way to share with others going through the same thing you will have the support you need. I hope this doesn't sound harsh but I have fallen into the trap of talking to my three sons about PMR and I have concluded they don't understand the condition.💕
Oh dear,he seems frightened of something.Can,t argue or discuss with this sort of outpouring of wondeous flaky preaching!! Ok ok.If it feels like dump of sewage… so you have to be like a mollusc or a turd… hang on in there or just gently float away……😂
I am sorry this happened. I will never understand why.people dismiss other people's ailments. It reminds me of when I was forced to stop working. I struggled with my health issues and talked with close friends about them but it changed some of my connections. And at a time when I needed those connections. With one person it felt like they were mad that I gotten worse. It reminds me when someone dies and anger rears its head. The person can't be mad at you for being sick.....but they can dismiss it and tell you what you are doing wrong....or they can pull away from you. They probably don't understand what they feel. It is a shame compassion is not on everyone's list.
Anyway...we all get angry at others without knowing it.......and then do things that are unkind. I am sorry this happened.
Maybe some day you can share that what he did was not helpful and was somewhat painful.....or not. I think it would help him in the end.....not today of course but....I think it would be good for him to hear that.
I'd be a bit rude here , which people on this forum know isn't like me , but I wouldn't want to upset you as he is your son.However , if it was me , I would be tempted to send him a thank you email saying:
" Thank you for our Christmas trip. I enjoyed it all , apart from the bullying. Thought you might appreciate looking at this forum and the charity website for PMR/ GCA UK so that you aren't quite so ill informed and inaccurate about a disease you don't have when you want to pick on me at our next visit. All my love , Mum"
So sorry but at least you got to see your grandchildren , treat yourself to a milk and cookies and have a nice rest x
How often am I tempted to really lay it on the line with my seldom seen son (who lives next door) but couldn't deal with the ructions and cold-shoulderings resulting from it. Uneasy peace better than destructive arguments. PMR would have a field day.
It may help in the end - but it will be too late to make it better. My dad passed 10 years ago, and every day I am reminded of my lack of understanding while he was alive. I don’t think I said anything to him hurtful but I could have helped him feel better. I actually think now he had undiagnosed PMR - or maybe it was diagnosed because was prescribed prednisone, it really helped but he was afraid of addiction. He told me the doctor suggested he had “arthritis” of the muscle. That is hard to believe for someone with no knowledge of PMR, I believe it now. Your son may have the same regrets in years to come. How I wish I had known then what I know now.
Thank God for little children! We who have grandkids are very lucky, for they do ease our pain. Also it is wonderful when you have such a caring forum to support you. Wishing you a very Happy New Year!🥳
There is an old saying; don't remember where I picked it up: "When it becomes more important to be right than to do right, that is the first step to darkness". I have been through everything your son was telling you to do. Yada, yada yada. I am so sick of know-it-alls telling me how to deal with an illness I have had for 20 years. I did gluten free, low sugar, etc. etc. etc. No difference in the disease process. The bottom line is just eat normal food, eat in moderation, not too much, a lot of fruits and veg. Jeesh! Just common sense. Only in a civilization so advanced that there are 4,000 calories for every man , child and woman (in the US) does food become the enemy. The truth is high protein diets are dangerous. Protein is hard on kidneys and aging kidneys do not process the protein as well, leading to kidney issues. Second, a certain level of carbs are needed to prevent protein sparing, i.e., the body steals what it needs from muscle and starts breaking it down. Don't quote me, but I believe 400mg per day of carbs are needed to prevent protein sparing.
I suppose it is racist to state that a lot of native Americans get Lupus. I guess it is racist to say that Africans get Sickle Cell disease. Every race of people have genetic illness specific to them. There is a cult in the US, FLDS, Fundamental Mormons. They still practice polygamy with a ton of inbreeding, especially underage girls to old men. It's an icky cult. The cult has a hidden secret; a genetic disease causing serious brain malformation at birth. The disease exists only in the FLDS, a genetic disease. The Amish in the US also have a high incidence of certain genetic disease. Some diseases are endemic to certain races and groups of people. Sorry, but sounds to me like your son just wants to hear him self be right.
The body actually turns to fat burning if carbs are low, not protein. That is the basis of keto diets - cut carbs and let the body use its fat stores. About 150g carbs is deemed the normal lower end of the range, about 300g is average. 400g+ would be for a very large person. The body only turns to using muscle in starvations situations where there are not enough calories available. so in illness or extreme malnourishment. You are unlikely to get into ketosis until you are under 50g carbs per day.
Very frustrating too to be lectured at. I despise that. I'm trying myself to learn how to fend it off by expressing how that makes me feel, but honestly, sometimes I just ignore it to avoid the battle. What is very frustrating is trying to defend my position on requesting vaccines be taken by my family who are visiting with me. Alot of right wing clap trap idiocy being spread around and that drives me nuts.
How awful and frustrating for you to be on the receiving end of your son’s misguided advice. I’m not sure where his approach is coming from however it may be the only way he knows how to process your illness. In his attempt to steer you in the direction he insists upon, he is causing conflict and possibly hurt feelings. Maybe he’s scared to see his mom “sick” but lacks the skills to support you in a helpful way. He must understand that indeed it is YOU who is managing the PMR and that his comment are hurtful/harmful.
Some folks have responded that you should just ignore him…..not something I could do as I’d be fretting our next encounter and likely start avoiding contact (which may result in less time with your grandkids).
Is there any way he would be willing to attend a doctor/rheumy appointment with you so that he could get accurate information and be on the same page as you? If not perhaps providing him with clinically/medically sound info may be helpful.
In the end a lot depends on the importance of prioritizing the relationship despite differences. I engage in this “dance” with my son at times which can lead to negative fallout. He should be aware that stress has a negative impact on PMR, and hopefully you can request that he stop generating and directing it toward you. If you don’t try likely nothing will change (my personal motto which I understand isn’t embraced by everyone).
P.S. My daughter, a nutritionist and nursing student recommended a LOW carb/sugar/salt eating plan and I’ve lost and kept off 40 pounds since starting pred 4.5 years ago. Adopting a NO carb diet is likely not to work in the long term.
Please know that you are informed, supported and cared for in this forum. We all “get it” more than most, because we have a shared lived experience. We cannot control how others will respond to our illness, but we CAN control how we respond!
So sorry you had to put up with this. I am a nurse and I have asthma so taking more steroids was not on my wish list. However as I turned 60 and working full time as a professor PMR came to my body. I think it was 3.6 years before it fully left. I would not have had a full life without the benefits of prednisone. Yes I hated taking it but knew that I had to live and function. I am 78 now and healhy -no broken bones - and no new issues. Happy to have found something that allowed me to live my life. Your son should tell all of us his cure for lowering our inflammation levels. It is autoimmune and there is no new or better drugs for us. Stay safe.
sorry your son was unsympathetic, I rarely even talk to people about PMR except for my husband (he’s kind to me 😊) and very rarely to my kids. I have couched my few conversations with them in the fact that one day it might affect them too. I read all the rants and poor me stories on here and on the Facebook group and I get it, we need places like this to vent because friends and family often don’t really understand or have any real knowledge of PMR.
This is a safe supportive and informative place and I am so grateful for it. Looking forward to 2023 and hoping for less pain and suffering for all.
Shame on him. I was sad about being alone on Christmas but I remembered that not all family gatherings are ideal and I'm sorry you were subjected to that. Shake it off and take good care of yourself. He does not define you!
After reading everyone's comments I am comforted knowing so many people have also dealt with insensitive, uncaring people, friends and relatives. I don't get advice but I also don't get any interest or concern in how I'm doing. I was diagnosed six months ago and my daughter, who lives in another state and with whom I barely have any contact other than an occasional email, asked once early on how I was doing but that was the end of it. This forum really helps me feel less alone. Well wishes to everyone who is bullied, or disappointed or sad by the words and actions of others and thanks for sharing your stories.
The big issue for you is that all the support you have received in this thread will pass and you still have to deal with your son, who unfortunately, appears totally ignorant of your difficulties ... and PMR surely is difficult. May I suggest that you print off everyone's thoughtful and kind comments and put them in a binder so you can read them again, and again and again on days when your son, inadvertently, tries to steer you in an uncomfortable direction. PMR is a pig of a thing. Its hardly even understood, and with comparatively little money spent researching it, I don't think I am going to see any advancements in my lifetime (I am 73). I wish you cheerful friends, sunny days, and continued goodwill from groups like this. That heavens we have them. I live in Canada.
On the other hand.... Just reading through this thread, and it occurred to me that my son's nagging was actually a good thing. Not PMR (although possibly the condition is because of PMR) and he told me to talk to my doctor about some rather vague symptoms, principally feeling like I couldn't get enough air when out walking. Because the doctor took me seriously and has not been at all dismissive, I've learned that I've got a potentially serious heart condition. I suppose knowledge is power although I'd feel a lot more confident if the now six months ago referral actually resulted in a cardiologist appointment. Without my son's urging I'd still be in not-so-blissful ignorance.
When it comes to PMR I don't talk about it much. After I'd had it for several years I remember I had to explain carefully to hubby that it wasn't fibromyalgia! And if it comes up in conversation with friends I always have to add quickly, no it's not the same as fibro.... But really I've been very fortunate, and it's a shame that the evident concern of some people translates into misguided attempts to find a way to deny that one has PMR. What we want is validation, not denial, because with an incurable disease, what else can anyone really give us?
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Think the postie lost it ...
PMR
PMR
PMR
**** no PMR !!!***
PMR or not?
