I am wondering if PMR (pre pred) can present in bouts, where symptoms last for a few weeks and then remit, and so on. If so, would that be factored in to the overall duration of the disease?
Since being diagnosed with hyperparathyroidism (not sure yet if primary or secondary), I can't help overthinking about whether I ever had PMR or just went into remission and then started to have the HPT symptoms.
I remember about 4 years ago, after the most stressful event in my life (a daughter's estrangement), I had a bout of extreme fatigue and muscle pain in
shoulders and hip area. It went away so I thought it was a virus. I had several of those " bouts" until the symptoms became continuous 5 months prior to dx. of PMR.
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Gaijin
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After reading posts here for over a year I am virtually convinced that 'stress' - whether physical, mental, emotional (and often they go together of course) are significant precursors of PMR/GCA and probably numerous other illnesses. Having also had a major problem within my own family prior to my diagnosis - not to mention several other very impacting incidents for a couple of years prior when I never felt 'myself' (constantly distracted and often distressed) - I dismissed many 'physiological' signals of what eventually morphed (I think) into PMR/GCA. Like you I thought these were passing problems which came in confusing permutations rather than in an obvious continuously amplified form. I am sure many people will agree that on reflection there were numerous 'signs' of what we now can see was 'early' PMR/GCA but like most of us I had never even heard of such a thing - although my own mother I am now sure had GCA - but it was always misdiagnosed and we and she never had the benefit of retrospection as we now do.
Isn't it interesting how our elders were misdiagnosed or not diagnosed at all for their illnesses and now we can oftenfivure out what they typically had.
Hi Gaijin I hope you get a yes to that question, I'll be interested to know I do believe that stress is a major factor in any illness and genetic link as is in my immediate family, my sister also had a daughter estrangement and I saw what it caused her health. Regards glenys
Thank you Glenys, It seems that children becoming estranged from their parents is becoming more common. I think it must be more painful than the death of one's child.. at least you have closure.
There is no way to compare the estrangement of a child and the death of a child. It is simply wrong. And closure is a myth. You have to have walked in these shoes to understand this. For your sake I hope you never do.
Sorry, I didn't see this till now. I'm sorry I offended you, I just meant that when a child disappears, you don't know their whereabouts, I personally would prefer knowing the child died than wondering what they are suffering at the hands of their abductor or whatever...like Romina Power and Al Bano. He preferred to accept that the daughter died and she preferred to keep her hope alive.
When my daughter gca me estranged, I didn't know where she lived, had no way of contacting her, basically, I didn't know if she was dead or alive.
I apologize for having offended you. It was insensitive of me to make a statement that on a forum where, due to our age, there are probably quite a few on here that have lost a child.
Hello Gaijin, that is an interesting theory. Nothing I have read would suggest that is a recognised pattern for PMR and yet it kind of makes sense. The estrangement from your daughter is exactly the sort of unbearable stressful event that can precipitate these diseases. I really do know what that feels like having experienced that shattering thing myself.
I have been thinking over my symptoms in the run up years to my PMR diagnosis, like jaw pain ( spontaneous not while chewing) headaches, especially at the back of my skull ( put down to Cervical Spondylosis). Sensitivity to light and low mood. There was always a feeling of flu-like aches and pains in the background.There was a spell when I seemed always to be at the doctor. Eventually I put myself into private psycho- therapy to try and root out the cause, for 4 years. This enabled me to gain some insights but symptoms continued and further stresses piled on. In a sense my PMR diagnosis was a relief. Something tangible to fight. Prednisalone was the first drug that helped me to feel better.
You may well get something more definitive from PMRPro about the disease pattern.
I hope your estrangement with your daughter got resolved and you can meet now in a place that isn’t fraught with old hurts.
My eldest ( whom I had when I was barely 21) and now lives in Australia (15 years) had a lot of issues in her own life to resolve. I always had mother guilt that she was with me throughout the years that I lacked the maturity to deal with everything in a way that would make her secure. She followed my first husband out to Australia where he re-married an Australian.She has worked very hard to become the grounded, wise woman that she now is. She works as a child and family therapist and I find her amazing. She needed to grow, well away from the shadow of me, but I like to think I planted many of the seeds of her harvest. Her dad died 4 years ago and we became closer. Letting them go is often the most loving act of all.
Sorry about the great confessional from your perfectly interesting observation and question. I find it impossible to separate mind/ emotions from physical illness.
I have Graves Disease (30 years) and no thyroid function following treatment, having been thyrotoxic. I take 125 microgrammes of thyroxine daily. I read descriptions of hyperparathyroidism with great interest. I’ll hang on to PMR and Pred. for now. Broken heart might have explained it better.
"Letting them go is often the most loving act of all." That's a comforting thought, SJ. Think I'm OK w my kids, but none of them lives near - some further than others - so I sometimes wonder.
But family relationships generally tend to be a bit of a minefield, in my experience. Won't go into all grisly details, but think it's terribly easy for misunderstandings to become magnified, and for resentments to fester.
I had a 'difference of opinion' w a daughter-in law some years ago. (Over child care - first grandchild and I had not yet learned that mothers-in-law should keep shtum under almost all circumstances.) She blew up and has been hostile (sometimes openly) ever since. I could live w that, though not happily, but am heartbroken that, of course, it has adversely affected my relationship w her children - my grandchildren.
Certainly feels like a major source of stress, and certainly does not contribute to my well-being, whatever the technicalities of a/I cause and effect. I suspect quite a lot of sad stuff might be attributable to broken heart.
Grandmothers and grandchildren are simply programmed to love each other. No matter how physically far apart, it’s there. There is nothing anyone can do about it, it’s just there. There could be all kind of reasons your dil is stiff with you. I am sure you could thaw her out if you really tried. God it’s hard
Thaw? Maybe. But we live half a world apart. She doesn't like England (where I live now) and refuses to ever come. And even when I was fit, I didn't find their environment easy to adapt to, either. And I've been cast as 'Nasty Granny, who doesn't like Mummy'. Not a good start. Maybe when they're older . . . I think she has always seen me as a 'rival' or a threat. You know the phrase 'smile on the face of the tiger' - that's how it has always felt to me. When my son is around, she pretends, in an exaggerated way, to be friendly. But when he's not around, it's a very different story. I know I'm not perfect either - but it is very hard. End of moan.
I knew that my paternal grandma and my mother were chalk and cheese but she was still my favourite Grandma. Be a presence as best you can with little gifts and letters. Detach yourself emotionally from engagement with dil if you can. We always know when knives are being thrown at us - try to brush them away. She sounds like a very insecure person.
Thanks for this, SJ. That's like a lightbulb going on - you're right, she probably is a very insecure person. Her parents were refugees when she was a baby, and divorced soon after. Her mother is uneducated, and she had to make her own way in the world - her defences must be sky high. Why haven't I seen this before? Maybe I can look at her in a different way after this. You have been extremely helpful. Many, many thanks.
Wow, Jane, that really rang a loud bell. I thought I had resolved the issue with my daughter when she moved back from Colombia where she had gone off with a man she hardly knew. She just needed a place to stay and pretended things were OK between us. Now she has a two year old child, she was in Spain for while and last week she went back to Colombia without even a text saying good bye. But this time I protected myself, didn't bond with her child and had no expectations from her, so I'm OK in that department. She is my youngest child for whom I was a stage mother. I took her to ballet schools all over the world, she danced with the English National Ballet..told me I was her best friend, blah Blah... She gave it all up for a shady man who is old enough to be her father.
I too have had all those symptoms, more in ine with GCA than PMR.
I can feel the pain of that story. You were so wall to wall and close then an older man looms and takes her away. Your carefully perfected, princess. You are going to have to pretend to like him and who knows maybe it will become real. As for bonding with her child, you have, it’s just shut in a cupboard marked “no more pain”.
We have to be there if and when it falls apart. It’s in the job description. They can leave us but we can’t leave them. I know it’s not fair. But this makes you ill and sad. Let go of the past and be where it is at now. That’s where I mean to be, but, but,but, no more buts.
I guess she was scared to tell you she was going back to him - I guess she wonders if she’s doing the right thing. You have to keep the channel of communication open. Send something beautiful for the 2 year old. I speak with presents sometimes. It kind of works. ❤️
Thank you Jane, My daughter never has an address where I can send anything or at least I don't know it. I never minded the age difference or going to Colombia.. I visited her there and witnessed some horrifying events. But it isn't that that causes my grief, Its how she has turned into a mean - spirited, totally self absorbed, emotionless individual, who takes advantage of her father's cognitive decline to to get financial help from him. I don't like her. But she does have several lines of communication open, although she has burned most the bridges with her siblings and friends, too. The man she is with is the Sleeping with the Enemy type. What kind of man marries without getting a divorce first? He has no profession, no Modus vivendi that I know of.. and yet they travel back and forth.. when I went to Colombia, I witnessed the man's cousin and his wife being shot in the head in their car by two kids, each with a motorcycle, drive up to the windows and killed them. I asked the family what the motive was, they said it was a mistake, that the sicarios were targeting another couple. I thought it would be all over the news but there was nothing except a small article at the back of a sensationalist newspaper. There was no police investigation. I know it sounds like I'm making this up, it's so surreal, but its true. I could go on and on about suspicions I have about them.
So in my case, the only way to protect myself is to try and forget her.
The world expert on narcissism, Sam Vaknim, who coined most of the terminology for it, says a parent can create a narcissist by putting the child on a pedestal as well as putting the pedestal on the child. I'm guilty of the former.
How harrowing Gaijin - but just remember one thing - NONE of this is your 'fault' - all you have done is LOVE your child and do your very best. Its very 'easy' to think that if people 'produce' half-reasonable children they must have done something 'right' - when in my experience some of the most dedicated, empathic and decent parents have had all kinds of problems while some of the more 'detached' have not. There IS no perfect 'formula' for parenting - and all we did was the very best we could at any given time ....
Thank you, Rimmy. That's, true, I've raised 5 children.. the other 4 have grown up to be adults that I am proud of, in fact they teach me how to be more evolved... and I brought them up with the same values.
You are guilty of nothing. If she is in the grips of a controlling and perhaps violent man.part of the pattern is to become isolated by everyone else by the controller’s manipulation. Including the money thing. I worked in this field. She has to know you are there for her no matter what. We can love our children and dislike their behaviours. Her real self is the little girl you took to ballet she’s in there.
Mine was well into her 30’s before she began to see the point of me. I went from being just glad she was alive to being so proud of her transformation. Just be there. I have never prayed so much in all my life. I’ll pray for you too.
You are so wise about these things.. You have such great empathy. I guess I'll never stop grieving the loss of this daughter of mine. I go through the stages of grief, and depending on the stage I'm in, I either have compassion for her or I consider her to be my enemy. I know she has Stockholm syndrome for this man who controles her so it isn't her fault. But at the same time, it's hard to forgive her for choosing a con- artist over her whole family.
I know exactly what you mean about the stages of grief. It was the test of my entire life. No wonder you feel ill, this kind of stress feels soul destroying. She’s a mum now. She’ll find out.
She doesn’t think she has choices. Make sure that running back to mum remains one. I have a friend who really disagrees with me and see this time as her turn. The person I am thinking of dodges babysitting, never mind anything more. You sound more like me. We never give up, we can’t and veer from rage to compassion hourly some days. Do you see what this does to your inflammation levels. It probably explains your symptom pattern. All that fear for her - Adrenaline over drive, para hyperthyroidism.
As Lear says something like “ an ungrateful child is sharper than a serpents tooth”.
She has a hefty helping of you in her, perhaps she will pull her fat out of the fire, sooner than you think.
I suppose there is no reason at all why it shouldn't happen - there are now medics who admit that it is possible for GCA-type symptoms to appear and disappear as the autoimmune bit aborts. No-one really knows what causes the immune system to go nuts but I am pretty confident that amongst all the other possible factors stress is pretty likely to figure prominently.
In some senses it is "easier" to identify patterns of previous history on the forums because we tend to mention things that are not part of a doctor's appointment. Shame studies cost so much to do properly!
It is very intriguing to see the things about autoimmune disease that are coming to light: today I read about patients with rosacaea being more likely to have coeliac disease, RA and MS. I still maintain there are not really specific a/i disorders - just patients "sort of" fit into a box of symptoms and get a label. But throughout it all - what really has to happen is that the right drug to manage the symptoms needs to be identified.
I have rosacea. Appeared in my mid 40s. Likely to be hereditary. Took prophylactic antibiotics as was only thing that kept soreness at bay. no sign of coeliac disease. I have a theory (of my own making!!) that the long courses of antibiotics wrecked my gut and allowed the AI a way in. Nothing to support my theory other than articles about leaky gut and trying to establish a cause for the appearance of PMR. Rheumy did note my Rosacea but nothing else said. Neither GP nor Rheumy pay much attention to my theory. Have always tested negative for RA factor, which I know doesn't mean much in itself. How do they move the diagnose to RA once PMR diagnosed and you are stuck on the steroid path? How do we get ourselves into or out of the right box??
The symptoms tend to change - joint pain isn't managed by low PMR-type doses and isn't typical of PMR. I think inability to taper to very low doses and appearance of other symptoms is most likely. Then they start to look again.
I would think it isn't unlikely that long term antibiotics did for your natural gut flora! But that is still a new concept - like low fat diets not doing weight/diabetes/heart disease any favour! It often takes a lot of mainstream medicine a long time to wake up and smell the coffee!!!
I know but as long as you don’t mind being made to feel a fool it’s ok!
I just wish I could remember the details from all the info I get from this site and articles to be able to justify myself and offer some supporting evidence. It’s easy for them, as the “experts”, to poo poo what we say and tell us not to believe everything we read online. Then your ten minutes are up and you have to wait another 8 months to present your theories again..
I remember before the internet, my husband used to come home from work and spend the rest of the day studying the difficult cases he had. Every surface in our flat was littered with medical text books,journals and photocopies. Sometimes, he would have an after thought and would even call the patient at home.Back then, they went by the WHO which required at least 45 minutes for first visit, at least for Neurology. Nowadays, doctors on the government payroll get 10 minutes for new patients and 5 for followup. How can they possibly diagnose properly like that? The endo just told me I have hyperparathyroidism and hypercalciuria, come back in September, which in reality is 15th of November. Again, I was given no instructions, shall I avoid calcium rich foods? Do I keep taking vitamin D (apparently not)? Is it primary or secondary? Nothing!
Luckily, my Rheumi appointment is this month and he is very big on markers, not good for PMR/GCA but good for HPT, I guess.
It's really easy to get caught up in a cycle of feeling crappy.. One condition leads to another. People here in Spain, most that I know anyway, and especially my peers, don't want to know anything about their conditions. They have blind trust in doctors. I
Blind trust? Hmmm . . . Well just look at the history of medicine. Centuries of feeling about in the dark, followed by a few years of discoveries and developments. Guess those are not going to stop so, in another few years, they'll have a slightly better idea of where our lot are going wrong. And so it will continue.
All you can hope for is that the medic you are seeing is reasonably knowledgeable, and is familiar with the best treatments that are currently available.
Worth mentioning, though that part of effective treatment is often the placebo effect. I think trust between medic and patient might be important for that. So maybe the folk in Spain are not entirely off course?
Getting it off my chest sure does help, I m feeling extreme cultural shock right now, despite having lived here for 45 years. Having researched my symptoms, and learned on the pmr/GCA forums, since having been diagnosed with PMR, I almost always feel like I know more than anyone in my circle of peers, most whom are retired MDs. They don't use the internet and act amazed at how I get all my information. I'm a close friend When I started participating on the PMR forums, I realized how culturally different I was to the Spanish and how comfortable I felt among native English speakers. Also, I'm much more comfortable speaking in English than Spanish, though neither are my mother tongue. I never feel comfortable with doctors here.. never know how to describe my symptoms. The terminology for symptoms is so culture specific.
So I can never hope to have complete trust with a doctor here.. Even my husband, a Spaniard and retired neurologist, trusts doctors! Hahaha
Cultural differences do indeed complicate things enormously. Different assumptions, different expectations and, as you say, what feels 'comfortable' or 'right'. My husband (retired endocrinologist) and I have extremely different cultural backgrounds. We've been together for 52 years now, and have each spent years in the other's country, but those differences are still there to some extent. We tolerate them. We occasionally comment on how many peers we had with everything in common, who divorced along the way, and wonder if we've 'made it' because we didn't expect it to be easy.
We have a real polyglot family now - Scots, Flemish, Yoruba, Singaporean Chinese, Norwegian - and all speak English with each other because everyone can manage it. But I know what you mean about the language. It's the embedded assumptions about what is 'normal' or 'acceptable', in a multitude of contexts, that I grapple with most. You can never take anything for granted. Keeps us on our toes!
I do empathise with what you say about describing symptoms - it's difficult enough even when doctor and patient are both (more or less) native English speakers. Mine often don't quite seem to grasp what I'm describing - but I think it's difficult to be accurate, with symptoms, as there aren't always adjectives that fit. We plough on!
You’re right BonnyQuine a doctor who is also a healer can do so much more for you. One who sees you as an individual who really matters. I’ve just seen an intelligent young man for a contact lens check up, he knew all about GCA and was so thorough and thoughtful, I could have skipped home.
My hero optician is nearly my age and in Blairgowrie. I do miss him but it is too far from here. I did travel from Durham though. Here I have to to the hospital to get pressures checked - mixed feelings about that!
Although I do manage discussing medical stuff in German very well (I translated it for long enough!) it is very nice to speak English with my current rheumy even though I feel very guilty about doing so. Makes a change from needing to use English because the doctor is an Italian speaker - and having to explain to the nurse what we have jsut said...
Very interesting thread, indeed. I have seen an article or two when a child was repeatedly hit at home, there would be some neuro DNA damages, published in one of the mainstream publishers. I would only assume that extreme stresses could cause oxidative stress in cellular levels/perhaps even leading to the degradation of one's DNA/turning the immune system to attack against us. There was this poor woman, who was abused from the age of 8 onward and she died prematurely from a "natural cause" but her mystery illness consisted of what appeared to be the constellation of autoimmune diseases. I wouldn't be surprised such prolonged, such extreme emotional, psychological, mental, spiritual and physical stress/trauma from such a young age had turned her autoimmune switch turned on to eventually destroy her. Stress is indeed a "killer".
It’s so refreshing and reassuring to read your post and the mention of Oxidative Stress and Cellular Stress. After a year of this horrible disease and a ton of research, some guidance from my Osteopath on Cellular Stress I realised that the only way to combat this was to find ways of ldramatically lowering the Oxidative Stress in my body which had caused damage .
Focusing solely on this, has been the huge turn around for me and the path towards full recovery!
I am interested that this is not talked about much more on this forum as a way forward rather than years spent on Preds?
I guess each persons journey is individual, I too had had the most stressful 5 years of my life so really not at all surprised to have fallen so seriously ill. 😞
This is not an area that I am familiar with Marimcdo. Although I feel instinctively drawn to the concept. I am sure we would all be interested if you elaborate further.
It could be very useful in the year after medication is finished and on-going to maintain cellular health.
Shortly after I joined this forum I wrote a post where I listed every stressful event that had occurred to me within the previous few years. I think I got up to sixteen, realized it didn't even include what had happened that day, which had triggered the desire to write the post. Then I deleted the post, never published it. Somehow that simple action helped me let go of a lot of the bundled up stress which had built up. I've never tried to recreate the list, nor wished to do so. That being said, none of my stressors included estrangement from a loved one, although a loved one had moved away it was not with any negative intention on either side. But there was a recent post here discussing stressors from early life, and that's what I think set the stage for what later transpired.
Somewhere on my old computer is about 60,000 words of me writing my story so far. It was very cathartic. It’s quite funny that I am not sure I could find it again and I don’t care. It served its purpose.
I love this question about "bouts" of PMR! My Rheumy and I agreed that I had probably had PMR for a few years, before being diagnosed both both GCA & PMR, in November 2017. For the past 24+ months, I visited the GP (on average) once every 3-4 months. I went in complaining about weird, one off symptoms like pain in my thighs & buttocks, pain in my neck and shoulders, reduced mobility of my arms and neck, pain in upper back, extreme fatigue, a general feeling of malaise, morning stiffness, and every 2-3 months I'd get flu like symptoms that would put me on the couch for a few days! The GP would say it was a "virus" or attribute the symptoms to my being a "woman of a certain" and I'd leave. : ( All the symptoms would, over time, reduce in their severity or completely go away... So YES, my symptoms seemed to come in bouts and stress was always a constant factor!
In January 2017 my brother was showing signs of dementia, I flew to the USA for what I thought would be 2 weeks; I ended up being there for 9 weeks and he ended up dying unexpectedly. I made the arrangements, cleaned out his apartment, took care of his affairs and came home to quickly finish planning my daughter's wedding which was in August.
Wedding over, I went back to work and volunteering in late August and on November 13th, I developed the WORSE headache that I have ever experienced in my entire life.
I believe the grief and stress on 2017, put me over the top; helped the PMR turn into GCA and hit me like a ton of bricks.
Wow, a lot of what you describe sounds so familiar. I would rather think that the "bouts" I had were PMR and that although I've only been on prednisone for 18 months, it is possible that I have gone into remission if I factor in all the months prior to my diagnosis.. I'd rather believe that, then to think I've been misdiagnosed and I've taken all that pred for nothing.
Interesting and scary to find out what some of us have in common. I too am currently estranged from my youngest daughter (since Christmas). She lives in New York and I'm in London. She says she can't deal with anything by email or Skype so we will have to have a face to face discussion next time she's home, probably in June. Trouble is I simply don't understand any aspect of her hostility towards me, including my 'lack of respect for her boundaries', so I don't know that a discussion will resolve matters. To me it certainly felt like 'kicking a man when he's down' as she knows how ill I am.
I am so sorry you're going this Marijo, especially now, if you're not feeling well. Maybe it's better you don't speak till June? It allows you to put some time and space between you and then in the beauty of summer, you'll both be able to look at whatever the issues are in a warmer, softer, summer light...
Thank you for your kind comments. In a way I agree about waiting until June. 6 months of not having to worry in case I upset her by something I say is a welcome respite, despite the unhappiness.
I've no doubt that in our future discussion she will explain what she means by her boundaries at great length. She did give me a link to an article which was supposed to educate me about respect for others' boundaries but it wasn't a lot of help.
Sounds a bit like one of my daughters. I stood well back and left her to light the blue touch paper while making sure she had a roof over her head. And after a very INTERESTING few years - she seems to have got back almost to reality. It is hard. One day she will find out what it is like from our point of view.
I just saw this, Marijo. I m so sorry for what you must be going through. How can our daughters not be aware of how much they hurt us? .
It's been four years that my daughter wanted to procure a green card for her husband who married her without divorcing his previous victim. In the US, bigotry is a crime and thus, the visa application would have been fraudulent. My daughter would have gone to prison while the partner would have been deported is all. That was the subject that caused her estrangement.
I hope you can iron out your differences when you see your daughter again. I grieved for my daughter for two years but I'm OK now. I just focus on my other kids and grandkids.
Thank you. Gaijin. My reply to PMRpro applies just as much to you. At least my daughter is not being as unreasonable as yours. If you were trying to protect her from an obvious villain, she should be eternally grateful to you. I hope she realises this one day very soon. But, as you say, the others do provide consolation. My 17-year old twin grandchildren spent yesterday afternoon with me and it was lovely.
Yes that all rings true, sad to say. Without going into details, I certainly feel I'm being punished by proxy for the appalling behaviour of somebody else towards my daughter - very painful since I was unequivocally on her side and made this very clear both to her and to the other party.
Sad to say that all rings true. I certainly feel that I'm being punished by proxy for the appalling behaviour of another person towards my daughter - very painful since I've always unequivocally been on her side and have made that clear both to her and to the other party.
Replying to myself! Sorry for almost identical responses. The first one seemed to disappear and I thought I'd accidently cancelled it. then it appeared with the second attempt.
Well it is doubly important, because you have hit the nail on the head .
This boundaries thing is over used. When they were 3 or 4 it was “ I can do it myself”! It’s the same thing and no they don’t do it so well because they haven’t got the benefit of our experience. So it’s our job to step back and let them make mistakes. Unless they are life threatening, of course. Tough call!
The fact is she's made her own decisions for years. She's the youngest of four and by the time I got to her, I'd long given up trying to influence my children unless they actually asked my opinion. On the whole all four have managed their lives pretty successfully. This is why I'm so bewildered about the resentment and hostility and believe it's more to do with her treating me how she'd like to treat the third party that I mentioned.
I am sure that I have taken the flack for the sins of others too. Either that or sometimes life isn’t as rosy as I painted it and I haven’t prevented her from getting hurt by harsh realities.
Yours is the baby of the family too and will have been regarded as such by the others. Perhaps that makes her fierce.
My three have a close alliance, I am definitely on the outside of some confidences. I suspect I am a figure of fun too at times.
Well, however things turn out, it has been very beneficial for me to receive all the sympathetic comments and to realise I'm not alone in my dilemma. Many thanks.
There is a theory that suggests almost all did-ease goes back to childhood stress--so much so that there is a belief that your GP should be saying " What happened to you that is unresolved" Could be-but sure doesn't help when you are crippled like a crab and in pain!
I feel the onset of these horrible AI diseases are a matter of chance. I have had several desperate stresses in my life but got through them on my own.
What about my mother during the war, four young children, on the East coast, husband away most of the time - night-time air raids, school lessons in brick-built shelters after the warning siren? 'Stress' only applied to metal constructions then!
I had this completely, overpowering , debilitating illness about eleven years ago and try as they might, with blood tests (which were 'deranged' in my GP's assessment) scans etc they had no idea what was wrong with me. After a few months I started to recover and eventually got back to normal, with no medical intervention whatsoever. I have read this can happen within 6 months of its onslaught - GCA that is.
Five years on it reared its ugly head again. In remission for five years? I think not. No particularly stressful situation, either.
I live on my own and no-one is interested in me, except the wonderful District Nurses who patch me up when I have skin tears on my tissue-paper skin after 6.5 years on steroids. I have become a semi-invalid because of it.
I understand that some suffer more than others and I shall be eternally grateful that the delay in my diagnosis did not result in blindness. How awful is that?
I think I am, at last, beginning on the road to recovery but at nearly 79 there isn't much road left!!
I send my sympathy to all those who are in the grip of this debilitating condition and urge you to get any help you can.
Dear Mega,thank you for your kind thoughts.I do hope that you are on the road to recovery.I think that you will find that there are people on this site that are interested in you .I am glad that you have kind nurses to visit you.Take care ,Dewdrop456
Aww Mega you have lots of people interested in you and your story, this place can be a lifeline for those of us who feel isolated by these lurgies, even more so for people living alone. I'm glad you have your kind nurses but know that there are lots of people on here to discuss our aches and pains with and to have a laugh with sometimes too. Can't beat a wee chat to cheer you up sometimes 😊 Glad that your pmrgca journey seems to be coming to the end at last.
You make some really valid points Mega. I am so glad that your untreated GCA did not make you lose your sight. It struck me when you said no-one is interested in you except your wonderful district nurse. Well I am. I would like to hear a lot more from you. You sound like a strong and feisty lady. Thank you for the good wishes you sent out. Keep in touch.
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Turns out no PMR or GCA
PMR morphing into GCA
recent study re average duration of PMR
Bicycle Riding with PMR/GCA
GCA Duration Expectations
