My rhumatologist suggested to me today that I should see a shrink. Not the answer I was wanting. She saws no more tests because I have already had too many. She believes my symptoms , jittery, stuttering speech, headache, fatigue, blurred vision, stiffness and weakness, are all due to anxiety and depression. I didn't feel depressed before the appointment but I do now. But then again.... what if.....what if there is actually some merit to her suggestion?
I get my blood checked regularly and apparently all my inflammatory markers are normal now. I WAS very sick a year and a half ago and I was treated in hospital for stroke like events and put on high dose steroids. While I don't have a for sure diagnosis we do know that I have some rare eucinophil related disorder, either idiopathetic hypereucinophilic syndrome or egpa which, I have been told would be treated with the same meds..... prednizone and a sparing agent....( I can't spell the one I'm on ... azathioprine I think) my rhumatologist says I'm in remission because I have no disease symptoms now. I argue that head ache, confusion, blurred vision, tight muscles...are all signs that I'm not in remission. She says those are not symptoms and I should get my family doctor to send me to a phycharitrist. Hummmmmmmmmm......well I can only keep up the 'I'm really sick and I need help argument' for so long. It's already been a year and a half and I'm no further ahead, unless ..... unles.... what if she's right?
She actually did tell me that my past brain MRI s show lots of damage and many small strokes. I guess they that's sort of progress since my GP has suggested it's nothing and I should be fine. Anyway, today the rhumatologist said that I need a shrink and that is a hard one to get past. She said that she believes I morn for the person I used to be. Yea, I do. She says that the brain damage I have often leaves people with depression and anxiety. Ok but did she need to say out loud ...... the psych Word?
But what if there is something to it? What if I am causing my own symptoms or aggravating my condition by being worried and on constant guard waiting and watching for something else to go out of whack? What if she's not wrong?
Thoughts?
Cathy
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Cathywp
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What you write sounds more like a suggestion you might benefit from counselling to help you learn to come to terms (sorry, I hate the term but really can't think of another way of saying it, take it as shorthand) with the changes that chronic illness has wrought on your life. In some ways it is like bereavement counselling - as you are bereaved of your healthy past and have to learn to live without it.
Either way - if you do what she suggests, whatever they say, one way or the other, you should benefit. Either they say "No, wrong, she didn't need my help..." and it is back in her court or they say "Yes, now this is how I would like to try to help..." and they offer what they have in their range of options which may help you a lot. Or even a bit - every little helps as they say.
Mind you - as a person who has an a/i vasculitis, albeit nothing like as bad as yours, headaches, blurred vision, tight muscles, sure as hell feel like symptoms of something to me! Perhaps it is semantics - her words don't mean the same as yours?
I suspect clinical psychologists can also prescribe but you are probably right. In other words - she doesn't REALLY know what she's on about. But a psychiatrist was the first person I saw before a referral to a psychologist - though I don't remember if it was him who made the referral.
But honestly - if your rheumy won't help, it is worth a try.
Following on from what PMRpro is saying - it may well be worth getting a referral if your rheum is recommending or suggesting this. I think the psychiatrist would willingly pass you on for counselling if they assess you and feel there is a somatic side to your being so unwell.
Otherwise they may well discharge you and say your problems belong in neurology and rheumatology not psychiatry. And this would give you clarity and confidence to stand your ground next time you see the rheum perhaps?
But a word of warning - I was referred to psychiatrist by my old GP after my RA symptoms died away but I still felt very unwell and my inflammation levels were still too high to be dismissed in this way. I had become very depressed after terrible medication allergies and traumatic experiences of hospital stays and because I felt I was still on some awful neurological or systemic roller coaster with a very widespread and painful small fibre neuropathy that no one could explain.
The psych wrote back to my GP saying they didn’t need to see me as they could see from the referral notes that my depression was merely secondary to my rheumatic disease - therefore an SSRI drug was suggested which I refused. I then had to self refer for counselling from a charity set up for drugs and alcohol problems - which I didn’t have. Fortunately my GP was supportive of this referral and pointed out that severe medication intolerances could come under the heading of drug counselling.
It really wasn’t so bad - talking to my counsellor really helped me make sense of many things. She was a good advocate. But when I relocated a few years agothe psychiatric referral kept flagging up with new GPs and the next rheumatologist and this prevented me from getting rediagnosis or treatment for a year. These things can follow us about.
I relate to how you must be feeling because I had my neurologist express concern in a recent clinical letter that she feels I have “heightened health awareness” I was really distraught by this and wrote back pointing out that I have a diagnosed rheumatic disease and it is affecting every part of me and impacting greatly on my life - so how would I not be aware?!
It’s a horrible feeling when our doctors tread very clumsily where they have no expertise and no real business going. But at least she said it to your face and you know where you stand so can sock it back and say “okay in that case please refer me to the relevant specialist and we will see what they make of me”?
Hi Cathy, I have the same form of vasculitis I think, cerebral/CNS. I've a few thoughts on what you've written, so am going to go through them in sequence.
Firstly I think it's common with this form of vasculitis to have ongoing symptoms even if your disease goes into remission. The brain damage can't be undone, and can only heal to a certain extent. You are likely to be left with a legacy of symptoms and disability.
More worryingly I find it concerning that your rheumatologist seems to be relying on your blood test inflammation markers being normal as a sign that you don't have ongoing disease activity. Blood tests in this form of vasculitis are often normal. Mine were for the first decade of the disease. I think you should seek a second opinion from someone more experienced with vasculitis. I think you're in Canada so is there a vasculitis charity in Canada that could help you find a good doctor for a second opinion?
A lot of cerebral vasculitis patients I've heard of have been referred to see psychiatrists or psychologists, usually because the medic treating them doubts their symptoms. Typically the psychiatrist or psychologist will conclude the patient is fine mentally, and they clearly have a physical disease, and refer them back to the referring doctor. So it can be worth going through, if only to tell the other doctor what for! Also coping can be difficult, so help with that isn't necessarily a bad thing. But I expect the psychologist will conclude you are fine.
Azathioprine is one of the weakest immunosuppression agents and it's possible it isn't controlling your disease enough. It doesn't matter that your blood tests are good, your symptoms are worrying. Please try to seek a second opinion from another rheumatologist.
Good luck! I've been living with my disease since 1994 when I was just 22. My story is online at
And as a P.S. all those symptoms you describe are ones that I've had - with others - from my cerebral vasculitis. All worse during flares / relapses, but never ever going truly away for me.
Wow you have been through more than anyone should have to go through. I admire you for finding the strength!
I really don't know what I have. I guess no one knows and I don't know how to change things. I guess I burned some bridges and now I have to pay. I can't get another referral anywhere. My story is so long and rediculous that I won't burden you with it. I asked too many questions and annoyed too many people and cost the government too much time and money. I felt it was very important to get an accurate diagnosis and then appropiate treatment for my condition. But I am finding out that I am wrong. I will summarize.
September 2016. I was sick for weeks. Almost not conscious. Thought it was 1985. Couldn't remember how to use a cell phone etc. Blood test revealed super high eucinophils. Hospitalized for 2 weeks. Lots of doctors and tests. Suspected: egpa, parasite, encephalitis, tumour, cancer, or IHES. tests ruled out tumour, encephalitis, and cancer or parasite. They decided it was not egpa and landed on IHES. I was put under hemotologist care for follow up-and sent home on 65 prednizone. I asked questions. What the hell do I have? What will it do to me? What's wrong with my head? Why is my arm numb? How come I can't walk straight? What's going on? Etc etc and the answer was usually that it's a good question and no one really knows because IHES is so rare. I didn't know I had brain damage although I knew something was very wrong. I had no answers and no one to ask except good old mrs google. The doctor told me that I had a myleoperiferative disorder but what the hell is that? The hemotologist talked about putting me on hydroxisomething which she said is a chemo drug. Yikes ! This was nuts! So I paid to get an appointment and a few answers from the mayo clinic. They said it can't be cancer if all the metabolic testing was negative. They said we need more tests to find out what it really is. I have a history of asthma, super bad allergies and nasal stuff, and constant ear infections and mayo thought that was significant but I decided to go back home to Canada to try to get it figured out rather than pay tons of money in the states. Hindsight is always near perfect is t it? The hemotologist was annoyed and happy to be rid of me when I insisted on seeing a rhumatologist for a consult. The rhumatologist initially felt I had egpa but after about seven months and four visits she has decided that I have no sort of vasculitis at all. I asked what she thinks caused my brain damage and she says probably an infection. I'm weaning off prednizone and now at only 2 mg plus 125 azithroprine...when I complained of feeling badly and wanting to see her a month ago she put me on a trial of prednizone 50 for 7 days and then 25 for 7 days. I felt great for the first couple days but then the fatigue and dizziness returned so she says that proves I don't have any sort of vasculitis and I need a shrink because that was a placebo effect happening to me. So she suggests joining a support group. My daughter says sure is there one in town to join? She says no I should join an internet support group. I said great! What group should I join? She says well one with other people that have the same problems. I asked what I have so I can know what group to join. She says maybe a group that has people who had strokes or lupus or something like that. Well I had been told previous by the hemotologist and my family doctor that I had t even had a stroke but that's a whole other story and I am getting off on a tangent. And she read my brain MRI from sept 2016 and said I had lots of strokes and damage so that explains all my symptoms and I need a shrink to learn coping skills. It would have been a heck of a lot easier to deal with if I knew I had it! Anyway so now I guess she is still treating me. I asked her if I have egpa and she said well let's just say you do. Is this all normal?
Can I ask you the question 'What if she's Wrong?', indeed 'What if you are actually (very) unwell?' Please don't get ME wrong, she Could be right....She could be however, dare I say it, Wrong.
I don't know much, if anything, about your condition however.....I WAS on Azathioprine, for about fifteen years, prior to a Kidney Transplant (in July 2013). I AM aware that Azathioprine Can have, quite Major 'Side Effects', for some people. My concern is this- If you are suffering a 'Side Effect', from ANY of your Medications, then Psychiatry/Psychology- of any sort- would NOT help you. Have you raised this issue, with your Doctors/Consultants?
Can/would you let us know, how you 'Get On', please Cathy? I know that we all send you our Warmest Wishes.
Hi Cathy I would seek a second opinion from a rheumatologist who specialises in treating Vasculitis. Vasculitis Uk may be able to recommemd someone in Canada or at least tell you how to find someone.
I also think there is no harm in trying counselling too to help you cope with your symptoms and whatever is causing them as they must be difficult to live with. But I would try to check that the decision your consultant is making is clinically correct from someone else.
I am in exactly the same situation I have large vessel vasculitis and aortitis along with other
loss of vision hearing all over pains heart fibulation anxiaty deppression o am not the person i was and i have been told count it as your own berievment what is all that about
i am on rituximab
some days i feel i cant live like this others i think there's a light go for it only to have it put out by some aggresive symptoms i now have osophyogus barrets mucosa? ?? along with severe pains at the bottom of my feet feels like I am walking on hot broken glass my legs burn and muscles ache constant discomfort is that anxiety???? I believe vasculitis and sarcoids are a wait and see pause desease what do we really know the past three years have made me think about things that never crossed my mind because prior I was too busy working I feel my body is fighting itself I cannot control anything in particular pain also my temper
I am on all kinds of tablets to combat side effects of the predisalone and retuximab any oneheading in the same direction ..?
"count it as your own berievment what is all that about"
Losing your health and having to adjust is a bereavement in just the same way as losing a partner or close family member is. Often counselling teaches us to cope better with the process.
It is so like that. I feel I can't live and that I have lost my life . l am trying to reinvent myself considering rolls i would never have looked at befor like cleaning and general duties it is about mindset to overcome the anxiety the medical does hinder and occurs when you feel you are moving forward mentally it is a bit of a catch 22. the pain becomes unbearable and the chest pains are alarming I don't know if it is the aiorta playing up or anxiety .doctors and phsycologists kind of step back and direct you towards each other?? does anybody feel the same?😊
I think many people do - but you rarely get together and talk together about it until you find a forum like these. So you think you are on your own.
You haven't "lost" your life altogether, it is totally different though. Someone nipped out and moved the goalposts when you weren't looking. It WILL get better in a lot of ways, it is unlikely to be "the same life of old" - and that you have to learn to live with I'm afraid.
Speak to your GP. Even pills help a bit at first but CBT or counselling of some sort will help a lot. If you can afford to pay it will be quicker of course but it will make a difference once you find the right person to help. They have gathered how important it can be to cancer patients - but it is no different for any chronic illness.
Depending on the dose of pred you are on, sometimes the pills to combat the perceived side effects are not necessary in all cases. In some cases there are other ways to manage them without drugs. You will find lots of conversations about that side of things over on the GCAPMRuk forum here on HU. We are very keen on non-medical approaches where appropriate there - sometimes it can't be helped but often it can - and really, we don't care what your label is, if we can help, we will try.
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