wondering
Posted , 12 users are following.
This website was suggessed to me for information to find coping skills after I prgoressed rapidly to GCA. I wanted to know about how people coped and learn from their personal experience. I admit I am more frustated now, simply due to what I am perceiving as others seem to related to finding something to accept blame over, something they might have done that has lead up to the horrible medical condition. This is something that even my own GP has used in discounting my explaining what I am feeling, rather than helping me. However, having said that, I do appreciate input, answers and shared experiences. In an attempt to find something that might personally help me with coping. But I am not a believer in somthing i personally have done wrong. Yes, at my age of 67, I do believe I have some well earned aches just from living. But nothing to the level that is so physically debiliatating as GCA. I am now in a three day flaire-up. I am feeling very defeated and tired from no sleep due to the horrific pain. My goodness, the word comfort is so darn elusive, and something I crave...thank you for allowing my vent.
Sheila
1 like, 68 replies
EileenH kup47
Posted
You're welcome to vent - if you can't do it on one of the PMRGCA forums where can you?
But I'm sorry you feel "what I am perceiving as others seem to related to finding something to accept blame over, something they might have done that has lead up to the horrible medical condition" - because after 7 years here I don't think it is something I have every really noticed. Often people feel that way when they arrive but it is interesting how their feeling change over time. Not within a few weeks possibly - but I have often said to people that yes, it is hard now - but in a year you will look back and see how far you have come. And most of them do say just that.
There is a thread on the HealthUnlocked forum at present about acceptance and how important that is. That is the point where you don't seek to apportion "blame" and leaves you free to push forward through what is an often long and sometimes unpleasant journey. Perhaps joining one of the other forums may offer you a more positive view than you feel you are seeing here?
You'll find the links here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
EileenH kup47
Posted
And I should have said - if you have that much pain then you need medical assistance soon as your current dose is obviously not achieving what it should do - a reduction in the inflammation and reduction in pain. If the inflammation is too much for the dose - it isn't enough and that leaves you at risk of further damage from the GCA.
catherine34621 kup47
Posted
kup47. Hi, Iam the same age as you and I quite understand your frustration, I have racked my brains searching for a reason why and think how silly (on my part) this is. Thank goodness I am not in pain, my sister has the same thing GCA which I didn't know till recently, so now I have given up looking for a reason and apart from the fatigue which is considerable, I could be a lot worse, there are people on here who know these diseases inside out and are always helpful so you vent all you like and take care.
jacky1950 kup47
Posted
julian. kup47
Posted
for me, in general, blame has no part in my life. If it were it would be associated with the past, And I can't change that.
To the best of my knowledge the cause of PMR/GCA (I don't have GCA) is unknown. Which means even if I were to look for something or someone to blame I doubt that objectively I would find anything.
I can change the future. I can change how I do things. Where possible avoid the things which aggravate my symptoms. Pay attention to diet and exercise as well as medication and pacing. But I'm human. My diet is not perfect, I hate exercise and I tend to do too much. I try my best, its not perfect, but that's ok.
I paddle my own canoe. I'm fairly independent and struggle to ask for help. But I'm learning.
There are people who can offer me useful advice, encouragement, even constructive criticism, and hopefully I'm always willing to listen. I've very deliberately focused on "cup half full", probably the most important part of coping (while not deluding myself).
Simplistically I can decide how to interpret what people are saying to me. If I were less positive I suspect I could interpret some things as blame.
The effect of my pmr (and pred side effects) on those around me has been difficult for me. I'm careful not to use disease/treatment as an excuse. My state of mind is always that I have no excuse. I have a reason, but that's no excuse. I can try to minimise the impact but something has inevitably changed. I can make people aware, not to gain sympathy, just that in some way it may help give all of us some understanding. Perhaps a bit of tending to ask for forgiveness in advance rather than having to apologise after.
Acceptance is not something I really think about. I guess I accept my condition but not in a static unchanging sort of way. I continually search (restlessly) for what I can do differently that will allow me to live as normally as possible.
After all that, if anyone wants to blame me that's their problem not mine. I can only do my best. But with all of the above blame doesn't seem to be part of my life. It serves no purpose for me.
EileenH julian.
Posted
mimi1950 julian.
Posted
Just read this post, feelings that I couldn't express but wanted to..
izzy1956 kup47
Posted
marian-colorado kup47
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kup47
Posted
amkoffee kup47
Posted
head and jaw area. What mg of prednisone does your doctor have you on?
EileenH amkoffee
Posted
That really isn't entirely true. Too many doctors are convinced that GCA only affects the cranial arteries but GCA can affect the arteries in the chest area as well as other places. That will cause more PMR-like pain but more often is not felt, it causes other problems. And for about 20% of GCA cases there is no head pain or any signs at all until visual loss occurs. The TAB is only positive in about 40% of patients - despite a lot of symptoms suggesting it really is GCA and is part of the reason that symptoms should always be taken as king.
However - it is a common misapprehension and even one of the acclaimed experts in GCA told a patient that her TAB "was negative which was good news, it definitely wasnt GCA". She did however still feel very ill and demanded he did more investigation because it had to be SOMETHING. He sent her for a PET/CT scan - which revealed severe inflammation in the aorta. Whether it is GCA or not is a moot point, they can't do a biopsy easily, it is a large vessel vasculitis though. He didn't have the courtesy to admit to her face he had been wrong and sent a junior doctor to hand over a prescription for high dose pred and "see you in 6 months". She was refused cardiac monitoring, which is recommended - and has recently had a heart attack. So even the top experts are well able to get it wrong.
Ardern kup47
Posted
I was in the same position almost a year ago. Have you been presribed prednisone
Ardern kup47
Posted
Hi Kup47
I was asking if you have been put prednisone. I developed CGA most a year ago and it took almost a week for the headaches etc to start to subside, but during that time the side effects of pred started to kick in. During that time i tried to stay away from caffine and sugar so when I had to option to sleep I could. Pain killers like 222 and tyenol seemed have little effect. In the mornings which was the worst for me I would put ice on the swollen arterties on my head that helped with the the pain. Your not alone just try to handle it day by day
Below is what I posted a year ago
Hi I am new to this group. I start with jaw pain no head ache esr rate 7. Then developed ocular migraine only when I took Tyenol. the jaw pain was so sever that I did care about the vision problem which only lasted 5 mins. About a week later I had a server head ache. when to emergency, blood still ok CT scan no problem one doctor said it could be Temporal Arteritis but see your GP. I saw him the next he may be but not likey. I was put on anti infammatory and 292 for the pain and a prescription for prednisone 50mg more blood work next still ok. 5 days later the anti infammatory and 292 where not do any thing for start with prednisone GP then up to 60mg. 9 days later I started to cut back 55mg. Mornings are terrible if I don't get out for a 30 min run or some thing else the day is wasted and can't sleep at night. By the way I had a bioposy down last week it came back positive thanks
Good luck it wil get better
kup47 Ardern
Posted
To all, thanks for posting: my diagnoses was slow, first showed with double vision, blamed on sugar levels, fith nerve palsey, ignored head pain that nothing would make go away. MRI of head showed nothing significant, no issues. Pain in knees, hips, back basically ignored by my GP, even tho my sed rate continued to rise. Then one day I awoke to horrible full body pain, neck would lock, both shoulder, hips and knees. Tolerated that for two weeks then took myself to emergency. Believe me I was to the point of being suicidal. Hesitant to perscrib Prem due to asthma and type ll diabetic issues. That ER Dr, suggesting that this looked like and showed elevated bloodwork to having polymyalgia. Immediate referral to a Rheu specialist who was confident with GCA, as my sed rate had been climbing and unusual for a person of my age. Blood test at apointment confirmed a huge spike of sed rate of 64. Started Prem at four 5mg tablets for three days decreasing to two as maintance. This did nothing, then increases to five 5mg tabs, decreasing to two. This helped, head pain went away, but was still getting flaires. Once again increased to six pred., and told to use the voice in my head on days I had flairs to increase my pred by one pill. My hopeful maintance is two 5 mg pill, and eventually hopefully a one mg pill a day.
Side note and a bit curious, I just had my yearly physical, in which I was given a thrid shot for adult Pneumonia Vaccines in my right arm. Two days later full body pain leading to GCA diagnoses.
Today, I am feeling better, after a horrible three day flaire. I did increase my pred to eight 5mgs pills. (This AM I have taken normal dose for day of six 5 mg pred). While I haven't had any issues with my blood sugar on days without flaires, which has been below 200. I have noticed that my blood sugar does rise, some say lack of sleep and pain will cause BS to rise. Yesterday on eight 5 mg pills my bs was 326, the highest I have ever had. Today my BS is 165. I slept well last night with decreased pain, with the help of one oxy pill.
My double vision spealist concers with the GCA diagnoses. He is new to the vision clinic. Stating a biopsy is not recommended as the results could be a false negative since I am already taking pred. However he does suggest if pain in head persit that I should see a neurologist. Now my head pain only comes on flair days. So I view this as being hopeful, and remaining persistant. I was told to wear a eye patch, which did help some, now finally issued a stick on prism after seeing double vsion specialist. Still not driivng as I am not confident enough as my depth vision is bizarre.
My next appointment with Rhue is the 21st I am wondering should I ask about pain management, perhaps some warm water pool therapy. My right arm has become totaly useless, I cannot lift anything or apply any pressure, with my right arm. One can imagine the other problems this presents. Humiliaty in learning how to do things differntly.
Thank you for the powers that be to get some days with no pain, or mild pain. Not a jorney I wish to be on with anyone else, but grateful others are willing to share the hope with me.
EileenH kup47
Posted
I have to say - i'm horrified at the management of probably GCA! You start with at least 40mg until all symptoms have resolved, then you reduce using return of symptoms.as a guide. Neurologists are not usually any use - eye specialists and rheumaotlogists are the usual go to. If you have double vision the GCA is probably still very active and you need a higher dose to manage the inflammation. Getting into a yoyo situation with your dose is the worst thing you can do - it makes things more difficult overall. And 5mg swings in dose also make things worse - the smaller the reduction the better, 1mg may be too much. I do realise that in the US they don't always have 1mg tablets but that should be aimed for.
I do appreciate the BS side - but if it is needed than insulin may be the way to go at least temporarily.
Ardern kup47
Posted
I have found that a lot of foods cause an adverse action to the disease or the preds. For the first few weeks I would wrap ice packs on the sworn arteries. For the last year I have been drinking 3 – 6 liters of water a day. Had to give up beer, red meat, anything that was over processed. It has gotten to the point where if my Grandmother wouldn’t recognize it don’t eat it. I just saw Eileen post about the amount of preds you are taking she probably right. I spoke with doc on the phone about the side effects of preds and he reply with that you have to get your auto immune system under control fast or else, I do not why you’re on such a low dose. It took me over 6 weeks to get down to 40 mg and I was tapering to fast.
You are going have to learn what your new limitations are it will make life a lot easier, also I kept notes on what I was taking and how I felt and what I was able to do from day to day. I still have a problem with my short term memory but it does get better. I have been able to get down to a very low dose in a year
My strenght also took a real hit. I had people think I had parkison disese. ther were time in the first weeks that i could bearly lift again on my right side. I beleive that the prednisone was leachin the caluim magnesuim and potassium from my body I still eat bake potatoes to increase my potassium levels
Good luck it will get better
kup47 EileenH
Posted
EileenH kup47
Posted
That's very nice for her - hope she enjoys herself! That is - by the way - said VERY tongue in cheek. What appalling continuity of care...
Even in 21 years she may not actually have seen many cases of GCA, it is a rare disorder and often seen by ophthalmologists or neurologists in the USA. If she dealt with all of them like that , maybe she has been lucky. But that complies with no guidelines for the management of GCA and 20mg is rarely enough to manage the symptoms initially and leaves the patient at risk of visual loss as you aren't reducing the swelling rapidly - that is the primary reason for using the high doses. They wouldn't do so if it weren't sensible. Your symptoms weren't well managed - that is an immdiate sign to use more.
I hope her substitute is more experienced.