Ok. Saw my specialist in Nov and as some know he started me on amitriptyline to combat the neuropathic side of things. Sent me for a sleep study for suspected sleep apnea (which turned out negative but my oxygen sat levels went down to 82%).
Rang him last week to ask what now and he told me to follow up with a sleep physician, keep on with the amitriptyline, and go back to him in Feb.
Right. Went to the gp this morning to get a referral for a sleep physician so I can get that appointment organised. All good. Asked if he had had any correspondence from specialist since my Nov appointment. He brought up a letter he received and we read through it together.
Now for the bombshell! The usual blah blah about blood results and lack of antibodies, symptoms I'm experiencing etc etc then proceeds to say that "these symptoms are due to depression and therefore a trial of amitriptyline has been agreed to".
Errr...what? Not once has he said anything about depression to me. His reason for trialling amitriptyline was for neuropathic pain syndrome!!!
As it turns out the amitriptyline is making me feel totally rotten. I've stuck it out hoping that it's an initial flare from starting a new medication but it's been over 6 weeks now and nothing is settling down but rather getting worse each day.
Why do doctors do it????? Why couldn't he just say it to my face so we know where each other stands. As it is, I'm going to let him know I'm less than pleased when I see him in Feb which is a lot less pleasant way to do it in my opinion!
Ok. Rant over!
If my current worsening is just a flare from starting a new med should it have settled down a bit by now? Or am I right in thinking that the amitriptyline is causing my symptoms and my disease to worsen and it's not going to be any better until I stop taking it?
If my problems were depression the amitriptyline would've made me feel better not worse? Then that leads me to question what actually are the diagnostic criteria for diagnosing depression anyway?
Sorry for the long one!
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1985mum
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Hi 1985 mum 🙋🏼...I know we live in the same neck of the woods, and we have been seen by the same rheumatologist ...I think I can actually feel your angst 💨💨💨💨😪😪😪😪. I too was offered amitriptyline and told it was commonly prescribed for neuropathy. I tried it and the side effects were way worse than the condition. I said I was not depressed and was reassured this wasn't the reason for the prescription.
Had my history printed out by the GP just before Christmas, on a scan referral , Lo! and behold, depression had been added. I think it's just way to easy to add this diagnosis and it's wrong. Very wrong. The diagnostic criteria for depression, I'd imagine , is quite specific..they'd be a checklist and corresponding treatment options...which you would think would include a series of questions about your mood?!
In my opinion, the amitriptyline effect could be confusing your symptoms if after 6 weeks you don't feel any better. You would know if it had addressed your so called depression and if it's not relieving the neuropathic pain then it is useless..worse than.
I'm sorry for you, I know it's been a long haul with many blind alleys.
Get back to your GP initially, and have recorded that you are not depressed and the drug is ineffectual at best and is quite likely harming you. I know the specialist won't see the GP notes and you will have to tackle him about it, so maybe you could take with you in February, a note from the GP with your concerns validated.
I was on Ami for depression, and as Penelope said, if it WERE an effective treatment, you'd be feeling better by now. As an anti depressant, the side effects shouldn't last more than a week. You're not feeling better, therefore it's the wrong medicine and the wrong diagnosis. You definitely have the right to show up and say that to your doctor.
Also, what a douche that doctor was, lying about what he told you. Not only that, but DANGEROUS. If they are not honest about WHY they are giving you certain meds, then complications about those meds can take ages to address (such as in this case.)
Also, if the doctor really was concerned about depression, he'd have talked to you about it. Untreated depression can lead to awful things, and the only way to treat it is to work with your patient about it. The doctor obviously just fobbed you off with some toss diagnosis, one that even he is unwilling to see as valid.
Couldn't agree more with the other comments - this random adding of conditions is just so wrong. It happened to me as well - along with pupruic Scurvy?! I told new rheumy registrar that they were both as innacurate as each other and listing them made my specialists look foolish! They don't like that!
He looked and said that depression had come off (I wrote to my rheumy no.2 to say that I wanted this taken off my list because it was vitamin D deficiency that caused my brief spell of severe depression - so he must have obliged).
My thought is that we have to challenge what we find listed on our hospital records and on our gp notes where possible.
Depression is often held up as an excuse not to investigate further or refer on I have found. As you say, there are criteria for this condition and it's important that these have been properly assessed. If the rheumatologist is saying your depression is secondary to your diagnosis of a connective tissue disease, then they should explain this to you before adding it and refer to it as secondary depression if you agree.
If not then I think they would need a psychiatric assessment to verify.
Otherwise, similarly to fatigue, they should just acknowledge it as part of having any long term condition and it should not warrant a mention let alone a quack diagnosis! After all they don't list arthralgia or fatigue or specify what kind of rashes or arthritis we have apart from saying Lupus, RA, OA or Sjogrens so why specify low mood in this way when it's just one of many features of active disease ? Grrrr!
Amitriptyline was prescribed to me ages ago by my gp when I described the excruciating toothache pain in my hands to him. He explained to me that it used to be used in higher doses as an antidepressant in the One Flew Over Cuckoos Nest days. But the zombie side effects were usually too bad so nowadays it's used at lower dose to help children and elderly with bed wetting issues (helps regulate the nerve triggering micturition I think) and nerve pain and other chronic pain problems such as vulva pain and sciatica.
If it doesn't suit you then just taper off it as I used to do often. It helped me sleep and my nerve pain flared up badly each time I had a break. Stuck it out as favourite med for three years until I realised that my eyes were so dry I couldn't even get relief from drops or lacrilube and also it was triggering severe palpitations. Hope this helps. It's really not used as an antidepressant, unlike Duloxetine - which creates a dependency and can be very very scary to get off. It's easy to come off Amitriptyline I found.
Your anger is completely understandable though and if I were you I'd take a "sort this out or I'll sort you" approach towards getting depression removed from your list of diagnosed conditions. After all is he a shrink or is he a rheumy?!! X
I agree very much with others. Ami helps a lot of people with neuropathic pain, and can help with sleep, too. If this person had not discussed your mood with you, then it is extremely poor practice to decide you have depression, and prescribe one of the older types of anti-depressants without any follow up to check on your mental health. By the way, my experience is that if ami is doing nothing, it's not worth taking. If you had been depressed, you'd start feeling better by now.
It's so easy for them to do the sweeping "depression" diagnosis isn't it? Perhaps at next appt ask this expert why they are seeing you if they are not a psychiatric consultant . Grrrrr. Sorry, but, this makes me angry.
Completely agree with everyone. If I had depression I would be feeling better. But I don't, I feel worse. And it's not like he's given me some dumba*** alternative reason instead of telling me he thought depression. He actually told me for neuropathic pain syndrome which in my opinion is not a fob off reason. So why the disparity!! The mind boggles.
I really want to stick it out and stay on it until I see him next because:
1. I can say haha I'm not a sook and I stuck it out just to prove it (even putting up with it through the worst Christmas I've ever had)
2. He has given me repeat antibody tests to have done to see if my ana and antibodies might be fluctuating hence why we never pick them up. He checked them in September and it was 1:80 with no detectable antibodies. Rechecked in early December after I had been on ami for 3 weeks and it was 1:160 with no detectable antibodies. So if the ami is making my lupus worsen then when I do another retest in Feb hopefully fingers crossed the ana has gone higher and maybe I'll have some antibodies to show! Dumb really that I badly want these antibodies but it'll be another way to say haha.
But then if I get too bad like desperately then I'll have to stop it. The gp was a bit confused that the specialist had done this and was more sympathetic with my story so if need be I can get his help.
It's dumb things like this that make us have low mood!!
And I daren't tell my husband.....he'll hang draw and quarter the specialist if I do! Partly the reason I'm venting here! Got to get it out...thanks for listening.
Have always thought myself so lucky to have a brilliant Rheumatologist after reading some of your posts but lo and behold when I saw her in December she said my fatigue was down to depression and prescribed a course of anti depressants for 6 weeks. After having Lupus for 15 years I think I know what Lupus fatigue feels like! Anyway letter went to my Dr and he agreed with me that I was definitely not depressed so now I have to go back to her and tell her I have not taken antidepressants. Maybe she was having a bad day so easier to lump everything under one bracket but how can they diagnose depression in 5 mins in the clinic?
I really felt let down by her and of course still have this awful fatigue which seems to be quite normal for Lupus sufferers as you all say
Love reading all your posts even though I don't join in very often
Apart from any other consideration - depressive mood is a common symptom of autoimmune disease...
Does it never occur to them though that being chronically ill is enough to put anyone into depression? And that when the doctors can't provide at least a label, and even more when they can't at least manage symptoms it makes it far worse????
I suspect most of us have been diagnosed with depression at some point; when they don't have a diagnosis or treatment they resort to depression - frustrating, but they are not that knowledgeable about the immune system - it fogs them and they don't like being fogged! I take no drugs now as they just make my symptoms worse. I have to be careful, perhaps yours is the same. I saw a dermatologist about my nail problem and she said there was one drug I could take, but warned me that although my nail problem is not life threatening, the drug could be and it may not work anyway. I muscle test everything including food because I am even reactive to food additives. I suspect many of us are and possibly dairy foods and grains, too.
The thing that gets me is he did discuss lupus/sjogrens and he did say this is what he thought it most likely is despite lack of antibodies and he did mention hydroxy but said he would try the ami first to try and help the "pain syndrome". I've known in myself for a while now that it's lupus but you just have to coax the doctors along and ask all the right dumb questions to get an answer without getting their back up. Then this! It's not like he hasn't provided me with an answer. I was ever so relieved when he actually said he thinks it is lupus. Why tell me one thing then tell the gp something different.
Tell me please where I can find out more about the muscle testing?
You could look up kinesiology in your area on the web. Ask though if they can teach you to muscle test yourself when you speak to a practitioner. I was taught by a lady in Falmouth - she did so to keep me alive as I was seriously ill and I live a hundred miles away, so needed to be able to test myself instead of going to her all the time - not practical!
Let us know how you get on. There are several ways of testing yourself including dowsing. The problem is I find, I can take none of the drugs, but then at least I save myself the problem of all the side-effects and makes me work harder to find another way or get to the root of the problem.
Hi 1985 Mum, I don't often post but i do read this website every day for it's excellent information and when I read your post it reminded me of a similar situation I had but with a consultant I had seen at a memory clinic after a referral from my neurologist. When I received my patient copy of the consultant's letter to my GP it said I had said I was depressed. Because of my memory issues I checked this out with my husband who had been with me during the consultation and he agreed with me that was not what had been said! After thinking about it and planning what I wanted to say I contacted the consultants secretary and explained my concern and that I'm sure she appreciated such a statement could wrongly influence any further treatment. The secretary agreed and said she would talk with the consultant and phone me back which she did with a fresh wording which I agreed with. The new letter was sent out and my GP was instructed to disregard the first letter. Hope this might help, we have a difficult enough fight to be taken seriously without complete misrepresentation!
Empathize with you! Had similar situation with a neurologist. He told me see psychiatrist B4 diagnosis which makes you feel crazy BUT don't let it. Also was on Nortriptyline from him. It made my heart race & other negatives. Switched to Gabapentin for my nerve pain...maybe try it? Don't waste your spoons "stirring" over doctor. Move forward as hard as it is....
Thanks Beezyb. I'm trying hard not to waste spoons on it in real life. My husband doesn't even know about it! That's what I love about this site. You can moan to sympathetic people and get it off your chest and then get on with life.
But a word of warning re this advice - Pregabalin and Gabapentin - they won't stop an immune mediated neuropathy from progressing - can only ever mask the symptoms at best and for me personally, they messed with my brain pathways.
Well...the "neuropathic pain syndrome" is another story entirely. My neuropathic presentation is mostly numbness and a bit of tingling/cold needles but not a lot of pain as such. So gabapentin is not really going to help there is it? And as you say it is known to mess with mental processes in some. [Proceed with caution].
Yes I'm now in same position and this makes me sad because my neuro says numbness is a negative symptom i.e nerves that have died can't be regenerated. So why don't these doctors try to modify the disease from attacking our nerves while they are still savable (i.e. excruciating), rather than prescribe us pain killier sticking plasters that can potentially mess with our brains? X
Well if any of us with so called depression ever made it to a shrink this might be so but "poisanilly" I reckon it's just so they don't have to bother about us so much and can justify sticking us on mind numbing pills and hopefully quieten us down in order that they can enjoy their holidays more! X
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It makes me feel quite indebted to my first rheumy for never listing depression or diagnosing fibro but always saying that low moods were an inevitable aspect of systemic inflammation. Bang on! X
I've just come back to see the further replies here. I have bipolar disorder, and am fairly stable on the psch med mixture I'm on. I have what they like to call "insight" into it, which means I take the meds, and can spot signs quickly. Not a lifestyle choice, but one advantage is that I have six monthly checks with that consultant, so that if any other medic raises the possibility of depression they don't do it behind my back, as has happened to some of you. They ask, and I have the privilege of being able to say that I'm fed up, but not depressed, and ask them whether they wouldn't be fed up themselves.
For me, gabapentin made me hallucinate within a short time and I simply stopped it. Didn't even titre up. A locum GP told me the symptoms would pass as I titred up, which is very easy for a locum to say because they are unlikely to have to deal with any outcomes. My own GP and psch consultant were very happy that I refused to continue.
By the way, I can date back what I am now sure was an early lupus flare to when I was in a psyc ward. It was completely ignored and classified as part of the psyc problems. Mental and physical health problems are still very compartmentalised. Stupid, but true. My psyc consultant does a lot to champion the fact that I have physical problems, but is very clear he does not have the expertise to diagnose or treat. Pity that other consultants don't have the same attitude.
Sorry for the long post, bit of a rant.
1985mum, I think all the advice you have here is worth following.
You have a lot to deal with lupiknits. I admire you. The problem comes in when we have conditions that need more than one professional and they all have their own take on things and pull us in different directions and we're left to fly around like a ping pong ball! What a dopey locum gp! Bipolar is not something you can just stuff around with and hope for the best. Good on you for knowing the right thing to do and acting on it.
Unfortunately if psych issues are present it's easy enough blame everything on that and it's a good escape route.
I haven't got any mental issues at all, never have had and it's not even as though it's in our family at all on dad's side or mum's side! More so were a family renowned for being strong emotionally (I don't mean to say that people with mental issues aren't strong but I think you know what I mean - lupus brain not finding the right words for what I want to say!). Not to inflate myself at all but facts are facts so to have made this assumption without actually discussing it with me kind of irritates me.
I'm glad for your rant. All our hi's and lo's together help each other along.
Thanks 1985mum. One of the things about professionals which I hope is changing is their perception of each other's specialty - sneering at GPs as would-be consultants who fell off the career ladder for example. Don't worry about the lupus brain fog and finding the words. Most of us have that at one time or another! I'm neither proud nor ashamed of my mental health any more than I am of my physical health. Keep on being as strong in achieving what you need as you are! x
I'm a bit late to this party, but perhaps I can add another perspective. First off, as everyone has agreed, it is not acceptable for a doctor to prescribe medication under false pretenses - you gave consent to be medicated with amitriptyline on the understanding that it was to manage pain, not as an antidepressant.
This might be more than an ethical issue, because dosage for amitrip often depends on what it is prescribed for - usually pain control dosages are lower than those for depression. So being clear about the intended effect of the medication is pretty crucial.
As far as criteria for depression goes, your doctor should be following what is a fairly clear-cut diagnostic process.
Thank you whisperit. I am on the lowest dose 10mg which is what is given for pain so as you say it's a lot lower than what I would be given for depression. Also he even told me himself that ami is not used for depression very much these days. So there again it makes me wonder if he's trying to pull the wool over my eyes or my gp's eyes!
I would look up the side effects for this drug and make sure you aren't having anything severe that can actually make your lupus flair worse! I am tired of the doctors giving us psych medication, yes I have high anxiety I am sicker than crap most of the time so how happy can I be?
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