A very confusing appt: So I had ny appt with gthe... - NRAS


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A very confusing appt

Someonesmother profile image
23 Replies

So I had ny appt with gthe rheumatology clonic and I got yet another registrar who I have never met, so I sort of lost it and started crying and said well if you read my notes you will know what is going on I am so sick of going through the whole story every time I come here. Where is the Dr I have been seeing before gone. etc etc. Anyway the rheumy I have been seeing since 2012 came in and told me I may not have RA and if I don't he has no idea what I have. I have to go for hand and foit U/S and if it shows no synovitis then I don't have RA. He will refer me to a pain clinic which I will get in to in about 12 months and I said if it is all CBT crap then I am not interested as I don't believe in it and it would be a waste of everyone's time. I also won't take lyrica or any of the other mind altering drugs or anti depressants so I think it is pointless. I told him I will just live on tramadol upping the dose as I am more unable to move or walk, what is the point. I guess I will get the junk diagnosis of fibromyalgia because no one can figure out what is wrong. I am so gutted and angry and upset. pushed off to no man's land because they have no idea what is wrong with me.

23 Replies

Oh dear. You do sound fed up. I was in a similar situation myself for over a year. In fact it has taken a while for docs to finally figure out what is wrong.

I think it takes a very long time for most folks to get a diagnosis. Eventually for me, my inflammatory markers became elevated, and I had clear swelling and damage to joints.

Fibromyalgia is an extremely painful and unpleasant illness to have. In many ways it's better to have this rather than another inflammatory illness that causes significant joint damage, along with other nasty issues. I know it often feels like there isn't much treatment for fibromyalgia, however, the treatments for inflammatory arthritis can be pretty awful, and is also often hit and miss.

The doctor's seem to be being fairly thorough, in getting x-rays etc. Sometimes tests come back negative only to become positive at a later date.

I hope you get answers very soon.

Someonesmother profile image
Someonesmother in reply to

Thanks NettieC. I was diagnosed in 2012 and have had a rather eventful journey with bad drug reactions and other issues so far, so this is like being chucked away with a junk diagnosis because they have given up. I refuse to take lyrica or any of those mind altering drugs as I have already had a bad experience with lyrica. I wont take anti depressants for the same reason and weight gain. I think I am in the too hard basket so it will be lumped as fibro which to me is a diagnosis that its all in your head and go off and do CBT. nope not happening.

Simba1992 profile image
Simba1992 in reply to Someonesmother

Have you ever thought about trying LDN? There is really something that could make a difference. Here the link if you want to look it up.😊 ldnresearchtrust.org

Someonesmother profile image
Someonesmother in reply to Simba1992

I don;t know if we have that in Oz. I will have a look, thanks

in reply to Someonesmother

I don't have fibro myself, though it was part of my differential diagnosis for a while. My sister does have it though, and I know she finds it very difficult. She seems to have flare ups when she is particularly bad.

I don't blame you with regards to not taking antidepressants. I think for some people they can make things worse rather than better, and it's certainly your choice. Everyone is different of course. My sister finds them useful, alongside an exercise program.

When are you having the ultrasound?

I'm assuming you have been tested for vit D deficiency? This can make you feel truly awful.

Anyway, sorry that you feel so frustrated and deserted, I know how that feels. Have you tried swimming? I know this suggestion will probably infuriate you because it doesn't alter the fact that you are in pain and are none the wiser as to the cause. However, swimming has sometimes been the only thing I could do that made a difference with the pain. It's easy on the joints, and good for lifting mood problems caused by pain.

I get your point that at least with RA (psoriatic arthritis in my case) there are a clear list of treatment options, such as steroids and disease modifying drugs. Though to be fair, one doesn't always feel better on them!

Were you ever given steroids?

Someonesmother profile image
Someonesmother in reply to

I have had vit D test it is good. I am so exhausted and fatigued from pretty much having no treatment for almost a year I couldn't exercise even if you paid me a million dollars. I can hardly walk for the pain in my feet and ankles so the thought of exercise makes me cringe at the pain I would be in. I walk with a walking stick and have not done stairs for nearly 5 years, I cannot even get up from a chair easily. I don't swim, I am not fond of swimming pools with the floating bandaids or water much. I can't take steroids as they made me so fat and I cannot now lose that weight and also have heart issues from the humira. I do not have any mood disorders. I am in pain which has been relentless for nearly a year now as it hasn't been managed at all in the past year apart from a few short weeks on steroids, fatigued to the point of wanting to never go to work as I can hardly walk in the mornings for the pain and totally fed up with the merry go round and no answers 4 years on. My U/S is Thursday so I expect a call soon after to say sorry you are off our books good luck.

Azabat profile image

I'm so sorry, my friend. I've only recently received the junk diagnosis, and I'm deeply grateful for my medical marijuana license. Hugs and hugs from the snowy north.

Someonesmother profile image
Someonesmother in reply to Azabat

It is junk diagnosis, it is where they shaft you to when they have no idea, then try and treat you with mind altering drugs because apparently that's where it is. Well no, I have the same symptoms that I had when I was first diagnosed, nothing has changed, in fact my ability to walk and use my hands has become worse over the past 4 years, I have developed TMJ and hip issues too. So what is different? I refuse to take their mind altering crap or the anti depressants they keep trying to push because that is not an answer, it is a cop out.

Thanks for your hugs.

Juliette64 profile image
Juliette64 in reply to Someonesmother

Hi someone's mother, I'm so sorry to hear of your delimma. Sending good wishes for some relief and a diagnosis that will lead to recovery .

I do understand your frustration . I'm sending good thoughts and wishes for a speedy diagnosis and relief.

Someonesmother profile image
Someonesmother in reply to Juliette64

Thanks Juliette64. I had a diagnosis seems I don't now. So now more endless months of untreated pain. So looking forward to it.

Juliette64 profile image
Juliette64 in reply to Azabat

Azabat, you're back. I just wrote in a couple of weeks ago inquiring how you were doing. Lots of us were wondering g how you're getting g along. Good to hear from you. Hope you are constantly improving.


Caza profile image
Caza in reply to Azabat

Good to see you back azabat.

There's nothing really I can add, so just sending lots of hugs x

Dear SoM, I'm so sorry you have been so very up against it for so long. I haven't been coming to this HU community much since my rediagnosis of primary Sjogren's - which I question often btw. So I have just been catching up with your posts and those of other NRAS HU friends.

I have had and still have the symptoms of RA, but not the erosive damage nor the extensive swelling of RA. Similarly to Lupus, my disease is a connective tissue disease which often causes my inflammation markers to be high and apparently means I'm at a significantly higher risk of Lymphoma and neurological problems than people with any other rheumatic disease are. There is a stronger possibility of organ involvement than with RA alone. None of these possibilities worry me too much because I deal with things as they turn up. However I have recently started another DMARD called Mycophenolate in a desperate attempt to improve my quality of life and future prospects. I'm told that if this fails there's no other antirheumatic treatment will be available for me.

Many with Lupus and Sjogren's are also diagnosed with Fibromyalgia and Chronic Fatigue is also a very established feature of Sjogren's. I haven't yet been told I have Fibro and my symptoms tarry more with mild RD and MS, to the extent that my balance and energy levels are severely compromised. I also have quite widespread OA. However I increasingly feel that Sjogren's is a "junk diagnosis" too because of the way it's treated - or not treated rather.

All most people with Sjogren's are offered, unless it attacks their lymph nodes and glands, is Hydroxichloraquine. If you fail to tolerate this DMARD then it's just a case of the mind altering drugs. I keep being offered these. Like you I'm absolutely not going to take these, having had my mind altered by two of these temporarily and had a worsening of my sicca with palpitations from Amitriptyline after three years. Instead I somehow have to learn to live with facial pain and a foul taste, tendinitis, around my entire body, tinnitus and a persistent rancid taste that makes me more unhappy than words can express.

So for anyone to say that my pain is a better type of pain with a less destructive outcome than someone who has to live with an erosive disease such as RA, is unhelpful. Pain erodes us spiritually and psychologically as well as physically. And being extremely drug intolerant is also a massive burden for some of us to carry. Some will die from cancer or heart disease or have strokes and some will die because of mental illness or just feeling life isn't worth living - so doctors who can only think in terms of mortality and increasing life expectancy depress me. Medicine should be more holistic than this surely?

What I believe doctors should focus on above all else is trying to improve a person's quality of life. And if really good pain clinics and physiotherapy or hydrotherapy are proven to help to improve quality of life then resources should be prioritised so that you or I can attend one just as quickly as a person can start Methotrexate or Enbrel or Rituximab or whatever. No one should be put on a shelf by doctors just because imaging doesn't confirm what a person is experiencing. Life isn't conveniently black and white and nor should medicine be. Sorry for the rant but you shouldn't have to live with this amount of pain, and treatment and help shouldn't just come in the form of medication either. Twitchy x

Someonesmother profile image
Someonesmother in reply to

Thanks Twitchy and I agree with everything you have said. I will be left to cope with ever increasung disability with no medication or asd8stance and no support. I cannot stand the fibro pages they are full of depressed, unhappy, highly strung and tempetamental, isolated people. Certainly not my cup of tea. So I can see as it progresses and my pain becomes uncontrollable, and I have no supports or anyone to talk to, my option will be to opt out of living as this will be no life at all.

in reply to Someonesmother

I would say this to them if no synovial inflammation is found on your MRI. Force them to take whatever is going on seriously. It shouldn't have to be a battle but it so often is! X

Someonesmother profile image
Someonesmother in reply to

I won't accept fibro I have no symptoms apart from joint pain that correlate to it and I refuse to do that charlaton CBT rubbish or take their poison mind altering drugs

in reply to Someonesmother

I do understand how you feel -especially about these drugs. I would be glad to have the option on pain clinic and CBT though so we differ in this respect. And they are non invasive and non drug related so what is to lose? Many with OA and RA attend pain clinics - but 12 months is stupid they should expedite this if it's all they can offer us.

Someonesmother profile image
Someonesmother in reply to

I have no faith in CBT, it may be useful for people who have gotten stuck in the 'my pain is the focus in my life' but I am very far from that and don't need it. I don't believe in it so would be useless and waste of resources to send me to do it. My guess is it will be the gun to the head, if you don't do that we won't see you, so I guess I won't be going to the pain clinic if that is the criteria. I also don't have a week to waste going to classes to be told how to be mindful. I know this sounds negative but I won't be forced to do something I don't believe in

in reply to Someonesmother

I do understand SoM - but I'm at my own wits end with my very bizarre symptoms and lack of decent rheumy input - despite a diagnosis I can sort of trust of a rheumatic disease and confirmed autoimmunity. So desperation will take me to some strange alternative, "functional" places that I would have been sceptical about until recently. Most drugs have proved to be my enemy and many doctors have let me down badly by showing poor judgement and making mistakes - having to backtrack madly at the expense of my health. I think you are in a similar boat. At which stage deep scepticism about alternatives might not get either of us very far?

Someonesmother profile image
Someonesmother in reply to

I understand Twitchy, but I have a deep mistrust of psychologists etc and over here this is how they try and shut you up by pushing you to junk psychology to make you feel it is all in your mind and if you just do mindfulness you will be cured and have no pain. It is total bs. It will waste evrryones time to make me do it. I just won't. I guess I just live in increasingly debiliratung pain and disability until I decide I have had enough then go to a country that has legalised euthanasia.

in reply to Someonesmother

Well I think I'd want to try and get to the bottom of what's causing it if I were you. If it turns out to be PsA or some kind of Spondy/ autoinflammatory disease then you may still be able to find something that helps. And I know exercise is a nightmare (I get vertigo if I turn my head now!) but hydrotherapy with a really good OT or physio might help you more than any drug could. There was a tv series here where a lab research doctor with functional leanings got three people living in excruciating pain for different reasons, off their cocktail of pain meds and anti depressants through top notch martial arts and physio and swimming. It's got to be worth a try hasn't it - before you consider an euthanasia option after a horribly pain ridden existence? X

turtlemom2 profile image

What happened?

Someonesmother profile image
Someonesmother in reply to turtlemom2

They changed ny diagnosis to PsA but that wasn't right either. I refused the fibro junk diagnosis, wnet to the pain clinic which was a complete waste of time as they treated everyone like some sort of drug seeking junkie and demanded patients do random urine tests which I refused to do as a) they could not promise my privacy as every other dr, nurse and allied health person in the whole hospital has access to my file, including admin clerks, and b). I am not a junkie and didnt want to be treated like one. I went twice and they discharged me becuase I wouldnt' take days off work to sit through CBT courses and other useles people talking at me about how to manage pain by thinking of something else, see a psychologist to gaze at my naval and they are not a prescribing service so absolutley pointelss to waste my time going there. I left the hospital system, the rheumy I had seen since 2012 refused to see me any more with absolutely no explanation just cancelled my appointment (my GP said probably because he had no idea what to do with me), and while I can afford to, I will see a private rheumy. Once I don't work any more I will just be managed by my GP I guess as I will never go back to that hospital again. I have been treated appallingly by the hospital system and would never go back. My current diagnosis is back to sero neg RA until they figure out what the hell is going on. I am on Brenzys, the enbrel biosimilar and tramadol at night.

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