"Your depressed and have anxiety and it's exaggerating your symptoms"
"Prednisone makes everyone feel better"
"Your labs are normal, there is no medical evidence"
"Exercise more" "Get some fresh air" - these last two really anger me. Like if I could go outside for a walk and some sun do you think I'd be inside having someone wash my hair for me or help me out of bed or into a chair or off the toilet seat for fun.
I have never felt so helpless in all my life and these are just a sample of the things I have been told. I NEVER want to hear them again. I wish my heart could unhear all the untruths and quick judgments that have been made about me and created roadblocks to proper treatment and diagnosis.
Written by
Boozsa
To view profiles and participate in discussions please or .
I'd say you are perfectly justified to feel depressed and have anxiety if this is the kind of "treatment" you've been getting. Even if a doctor doesn't know much about an illness, and it sounds like your doc needs a crash course, they at the very least can respect the patient enough to treat the symptoms seriously and work with the patient. I wish there was something I could do to help.
Thank you, I feel so unheard so it means a lot. I’m really am trying to be strong and keep fighting for relief, help, but these last 5 months took a toll and Tuesday was a tipping point. Facing another night with this kind of head/jaw/scalp pain feels endless
I just looked back quickly at some of your earlier posts and it looks like your struggle has been going on quite long enough. Is there nowhere else you can go to get your case looked at by more competent doctors? The issue really is, if you do have GCA, you are at risk for very serious complications: blindness or even a stroke. You don't want to be the victim of medical incompetence or negligence. Have you seen any of the literature available? How would your primary care physician react if you were to take in an article describing PMR and GCA?
Another possibility might be an ophthalmologist. Often they have a much better grasp of the implications of GCA as they may actually have learned about it in school even if they haven't seen many if any cases.
I will read the articles now. I have gathered some things for my GP , I can’t see him until Feb 25th but I will add these. There is a long list of things that have made a difficult diagnosis even more difficult. So part of me understands but the part that is suffering doesn’t understand why only the negative findings are used and not all the things that add up when you look at the whole picture. If it can’t be proved in black and white, I’m making it up essentially. I really am backed into a corner until at least the 11th. Thank you for caring
I have the same problem getting appointments, although not quite as bad as 25 Feb but usually four weeks. One week or so for a phone appointment. It is not a matter of getting a new doctor it is a matter of moving surgery which in my case is not really practical as I live in a village with the surgery close, if I changed I would have to drive several miles if they would have me, as I am not sure I would be in the catchment area.
Oh piglette! I had no idea you were struggling along with such inadequate care. That really is not good enough but you don’t have any options do you? So sorry darling 😭😭😭😭
I saw an eye doc in the beginning of 2018, didn’t have ocular involvement at the time but he was still concerned about my symptoms. I’m making another appointment today but is there always ocular involvement or can you have GCA without ocular symptoms? I started having eye swelling about 4 weeks ago now. The area below and to the right of my eyebrow swell and it’s like I don’t have an eyelid. That’s the only change I’ve had with the eyes recently.
but Fig 1 has a nice clear illustration of how GCA (head) and LVV (trunk) and PMR (limbs) can overlap. So, no, you don't always have occular symptoms - although there can be signs on the place where the optic nerve leaves the retina that it doesn't have an ideal blood supply somewhere but to see that you have to have a full eye exam. However, a considerable proportion of GCA patients do have no signs at all, not even stiffness, before they suddenly lose vision. If GCA is only present in a relatively small region of the head arteries, it may cause no recognisable symptoms at all and be missed. In some countries opthalmologists will manage patients with GCA - is this doctor not an option?
It’s still only 7:30 am here so as soon as the office opens I’m going to call the eye doc for an appointment. Thank you for the article, I’m will print and read it now.
I can identify with some of this ,my doctors were confused with what I had so just doled out painkillers and largely ignored me for well in excess of a year . If it hadn't been for my optician it would have been longer .I dread to think .I didn't even manage to get any interest other than ''Here try these '' panikillers and then what about some anti depressants . Thank heavens the optician saw whatever he did and wrote to them and then after all that it was a locum who looked at me with fresh and willing eyes .Don't be passive about this ,they will just fob you off . Get your eyes checked .Sometimes that shows something up .Tell the optician what you have concerns about .Its absolute hell having the thought that no one is getting a grip on this when you are suffering and afraid .
Most of us struggled in the beginning. It is hard because there is NO direct test to prove or disprove PMR/GCA diagnosis. It is a set of symptoms that can be caused by many other condition. Diagnosis is done by eliminating other possibilities and then when nothing else is found, the only thing left is PMR/GCA. I have "only" had PMR and was very aggressive in the beginning. I gave doctor(s) 1 week to come up with something and if he didn't I found another one. Three doctors later and about month after symptoms started I had preliminary diagnose of PMR and was refereed to rheumatologist. Then another 2 weeks of CT, MRI, Xrays and many blood tests before finale diagnosis.
So you are not alone in struggle, but also don't let them push you around. Hopefully you will find the right doctor to diagnose what you have.
You have one major advantage - it is very common for female autoimmune patients to be disbelieved and classed as "hysterical", "somatism", "depression" or simply "attention seeking".
I had different problem. Every doctor felt that I exercised too much (I was training for triathlon) and I needed to rest, and ignored the symptoms of PMR. Finally when the third doctor told me the same, I said that I have tried to rest and it did not help and that I think it is something very serious and he should look deeper. I know how it feels to overdo the exercise and this is not it. This prompted for the first time that they did complete blood tests and , luckily I had high inflammation markers, so Dr said that he is not sure but he suspects a unusual condition called PMR and refereed me to rheumatologist. Remember this was in Japan, where PMR is even less common then in Europe.
Nick my husband is a runner so I understand. How fortunate that you were able to speak for your self. If one knows what feels different and docs listen it’s a relief but it’s so hard. We are bombarded with strange symptoms and often docs are dismissive. Xxx
Nick it’s disgusting isn’t it. The ignorance out there xxxxxx
Oooooo Boozsa, how horrible! This person needs a lesson in empathy... and perhaps a slap! You said it though... you know they are “untruths!” They are bullshit... and you may not be able to un-hear them but you certainly don’t need to allow them to have ANY power over you. Just let them go. You know the truth.... you can work with the truth! xxx
As one who had five weeks with screaming symptoms and miss diagnosed by GP husband and his Partner followed by torture from a Physiotherapist who made me much worse, it was only when I rang another GP pal saying I thought I had a brain tumour that he asked the right questions and started me on Prednisolone immediately, four hours later I was symptom free.
What I have learned is that we are all different and as PMR says it’s ridiculous to wait until almost the end of February
Hello Edith!!! I’ve missed you so much!!! 👩❤️👩 I have had those torture experiences. So glad you got the help in the end. We all need to write a book xxxx
Inhumane treatment is unacceptable. Callous people need to be ignored. Get a new Dr. immediately even if you need to travel a distance for a good one. Let us know what happens. The forum is the right place for TLC!
rough night , 3 am here, no sleep, head pain and sensitivity when touching pillow on right side. My GP doc and clinic situation is a mess but it’s been this way. It’s one clinic, the only one in my town , Docs don’t stay long so I’ve had 7 GP’s since this started (2015)
I’ve been on a wait list for a new GP clinic in the town nearest me 1 hour away, I’ve been on the list 2 years now. It’s part of the problem, not even my GP’s are around enough to see what continues to happen to me so I get a lot of inconsistent care. As soon as the office opens I will make an eye doc appointment, hopefully can be seen sooner. Thanks for all the encouragement.
I'm sorry you're in so much pain. Are you already taking pred? If so, what dosage?
In your situation, I'd go to A&E. PMR, head pain & sensitivity point to GCA - you can't take any risks. If a doctor won't see you til the end of Feb, go to A&E.
Agree with everyone else that your treatment has been abysmal- or should I say lack of treatment and fobbing you off with comments that can just make you feel useless and over the top. All these things have been said but as Melissa said do not let those comments define or have power over your thinking. As you are reminded of the comments dismiss them and move onto the truth. You are ill and you need someone to investigate and take symptoms seriously and to follow through. So pleased you are going to Opticians. Let us know how you get on. Best wishes Jackie x
Hi Boozsa. I’ve just been reading this thread. I’m so sorry you’ve been having such a rough time. There’s really nothing worse than not being believed, or being labelled with emotive descriptions.
I thought you might be interested in the following. Us PMR and/or GCA sufferers are not alone. It appears to be a common reaction by those who should know better, to many people suffering from autoimmune diseases. Completely by chance I caught a really interesting debate going on in our House of Commons in parliament yesterday. Yes, they are actually talking about something other than Brexit!! The debate was about ME. Lots of MPs spoke. There were some really heart wrenching stories about the way MPs constituents have been treated by not just the medical profession, but Department of Work and Pensions people as well. There are 250,000 people registered as suffering from ME in the UK, from young children to adults. The amount of money the government currently spends on research into the cause of this condition is equal to £1.00 per sufferer. The patients charities have funded the bulk of the research to a tune of £850,00. NICE have had treatment guidelines out which have now been found to be actually harmful and they are putting a warning notice on them. They should be withdrawn completely, but they say they won’t be issuing new ones until end of next year!! The DWP have been acting appallingly to sufferers when assessing them for benefits. The overwhelming message from MP’s was that sufferers have to be believed and the current NICE guidelines withdrawn, new ones issued sooner and more research needs to be done into the causes of autoimmune diseases and effective treatments. Apparently according to the minister, there is research money available, but nobody has submitted bids for it with good quality clinical research proposals. Are we autoimmune disease sufferers the victims of lack of interest in biomedical research in this condition by the medical community????
I really hope this post doesn’t depress you. I’m just putting it out there to say, “you/we are not alone”. Attitudes have to, and indeed are beginning to change, albeit slowly. Hopefully, somebody will pick up the gauntlet and do some good research into the causes and effective treatment of both ME and other disabling autoimmune conditions like our own. I know PMRGCAUK are doing their best to help us, so I am definitely not saying nobody is fighting our corner, but it was really interesting listening to the debate. It will be interesting to see if anything positive comes of it.
I hope you find some more empathetic medical people to support you. Lots of people here are on your side. Big hug 🤗 xx
I have heard these dispiriting and untrue things too. I wish for you that it was being resolved. If I recall you are too young for the typical PMR demographic but you were really helped by a trial dose of Pred, is that right? Fibromyalgia has been bandied about too. You need a doctor who hasn’t lost his curiosity and compassion. I pray that you find one.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
This is a bit off topic, but I wanted to introduce someone special...
My mum is 88 with PMR and I want to advise her.
I want to stop omeprazol after 25 years of use
Doctor visit tomorrow don't want change i don't know. 😤
Son who I live with wants a new acquaintance to visit. 
