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Is a Rheumatologist's diagnosis valid enough?

Sun, 01/06/2008 - 8:02pm — Rhonda

Hi there

I'm new to the forum and live in Sydney. First of all, thanks for taking the time to read this email.

I've recently been diagnosed with Fibromyalgia by a rheumatologist but my GP thinks he has just called it "Fibromyalgia Syndrome" because he couldn't find an inflammatory disease. (I had Adult On-set Stills Disease 1995-1997 which I saw this rheumatologist for and the concern was that it may have come back but it has been ruled out).

The rheum Dr said that the management is regular exercise and anti-depressants so, as I'm already doing this, he said he wasn't going to refer me to anyone else or suggest any other management plan. (regular exercise used to mean doing a sport 3 times a week, now it means just having a shower and getting the kids dressed and fed each day!) At the time I thought he was being pretty blase about it considering how I was actually physically feeling. Being in his office on my own, I wasn't thinking quickly enough to ask many questions and before I knew it I was told that it's great that I don't have a degenerative or inflammatory disease, so I've got nothing to worry about.

Now, I agree that things could be a LOT worse given that I'm not bedridden, nor are my joints being ruined by rheum arthritis. However, I am unwell and need help managing it. If I'm brushed off by a diagnosing doctor and then not really believed by my GP, where do I go? Or do I just try and research myself and try different things to see what works? Am giving remedial massage a go at the moment plus eliminating caffeine and alcohol.

Has anyone else been diagnosed by a rheumatologist? Any thoughts on a next step to take?

Thanks so much
Rhonda

‹ Still confused after all these years.. does anyone have CFS like mine? Why do I get the impression they think its all in my head? ›
Sun, 08/06/2008 - 3:55pm — vic

Forget Doctors!

Victor

Hi Rhonda,
Your treatment by doctors is quite typical treatment for people suffering from CFS/Fibro. I had the same thing. They almost always prescribe pushing yourself or regular exercise as well as anti-depressants. I definitely suggest you do your own research, but be careful about trying different things as there is a lot of fake remedies out there and quite often they can make you feel worse! If you need a doctor try to find one who is more supportive and understanding; the society may be able help you there. Moreover contact other people who have the same illness as you for support and ask them about treatments, etc. Also stay away from things like alcohol, caffeine, junk foods/drinks, etc, as they will in most cases exasperate your symptoms and have a healthy nutritious diet. Furthermore don't push yourself too much, regular exercise - while beneficial, may in your case be harmful because of your already busy schedule. In my experience that is all you can do.

I hope I have helped?

Take care.

Vic.

Wed, 11/06/2008 - 9:37pm — Rhonda

Thanks

Hi Vic

Thanks so much for your reply. I've since had time to read much of the other forum topics which cover similar issues and it has all helped me a lot thanks.

keep well
Rhonda

Thu, 24/07/2008 - 5:42pm — Kathleen

Rheumatologists - stay clear!

I would most definitely never set foot in the door of a rheumatologist. I am an ex-chronic fatigue sufferer but I am still judged on having been unfortunate enough to have had this.

In 1995 I saw a rheumatologist for a back problem. On seeing I had chronic fatigue, he immediately prescribed anti depressants and referred me to the pain clinic at North Shore Hospital. They would not accept me onto their program and didn't know why I had been referred. An MRI was run showing I did not have a problem with pain but rather 3 disc bulges which were pressing on nerves. Surgery fixed this problem.

In 2000 I recovered from my chronic fatigue, however, now whenever I go to a doctor, on hearing I had chronic fatigue in the past they automatically put anything down to depression or "pain syndrome". In September 2007 I lost the ability to write. I was again referred to a rheumatologist and as soon as he heard I had had chronic fatigue he dismissed me saying "that explains everything, people with chronic fatigue get things wrong with them all the time, but there isn't anything actually wrong with them", he refused to run tests and a worker's compensation matter was denied on the basis that I was simply a depressed person and because i had had chronic fatigue over 8 years ago, although now better. I saw another GP and an ultrasound immediately showed up I had ulnar nerve problems to both of my arms, and because this had been missed, I am now up for great expense and a long recovery time. So guess who were wrong again, the good old rheumatologists in all their prejudices.

I was then referred to another doctor at a supposedly leading Sydney hospital to rule out rheumatological factors as my mum had had lupus. Although I already had a diagnosis, she proceeded to rediagnose my arms as "pain syndrome" - I have since written a letter of complaint to this hospital, as I am sick of doctors still, despite my recovery, claiming simply because I had chronic fatigue in the past that I merely have an issue with pain.

Those who know me know this is not true, but nevertheless it is upsetting to keep coming up against such prejudices. My advice to you is stay clear of these people - they are just negative forces. I would also advise that if you are lucky like me to recover from your chronic fatigue etc, that you are better off never letting doctors know you have had this, otherwise, you will never be treated properly.

I got better because I was treated by a doctor who had had the illness herself. I changed my diet and once energy resumed was able to take up my sport again. I will be lobbying to the Minister for Health to have such ignorances erased from our pathetic health system.

Kathleen

addendum. Since posting this message, I have now been told by a surgeon that I have a very complex arm condition which requires surgery to both arms to rectify not one, but five problems to my imaginary injury. Yet if I had listened to the many rheumatologist this would have gone on ignored and worsened. If you know there is something wrong, go with your instincts and forget the sceptics, particularly rheumatologists!

Wed, 30/07/2008 - 8:35pm — DJ

I can relate to your experience Kathleen

Hi Kathleen that is truly shocking the way you've been treated due to prejudices around having or having had CFS in the past. Sadly doctors are moving more and more towards classing conditions as psychosomoatic or as a mental health condition like anxiety and depression and therefore won't investigate or treat.

Rhonda I'm also sorry to hear of your poor treatment as well. When you're feeling ill then you deserve proper treatment.

I have a heart tachycardia which is not well known so is often mistaken as being anxiety and thus when I present at a GP to get something done and mention the tachycardia the thing I've gone to get attended to is deemed not necessary and refused. It is very frustrating when something else does need attending to and in your case has had very serious consequences and has even denied you W compensation to pay for treatment.

I have uterine fibroids and was recently advised if they had been caught early they could have been removed through a D&C method rather than an invasive hysterectomy yet they were discovered early but deemed not needed to even monitor. However fortunately that has been the only consequence.

I now don't mention the tachycardia and have started with a new GP/medical centre who does not know and the difference in treatment has been incredible. They were more than happy to do general blood check ups, refer me to a neuro for migraine treatment, refer for the uterine scan without me needing to show evidence and asked what my specialist thought (nothing as I don't have one) and advised of the D&C method of removal and said they would monitor them as I didn't want a hysterectomy, told me to give up alcohol to test if a high liver reading was due to liver sensitivtiy to alcohol and then retest, check BP and as it showed up possible past Hep A want to retest the liver after a 6 month period to allow for recovery. Yet I'm sure if I'd mentioned it none of this would have occurred.

What's so crazy is that there are like 7 or 8 subtypes of CFS with varying reasons and treatments ranging from post viral to chemical to food allergies and so forth.

But even if people have unexplained pain or fatigue it doesn't mean they won't respond to treatment for other conditions.

Anyhow I thought you'd be interested in checking out the following link which will provide members with insight into what doctors classify as psychosomatic (which is getting less criteria all the time) and their approach. http://www.mja.com.au/public/mentalhealth/articles/singh/singh.html

Good luck with it all and take care DJ

Sun, 03/08/2008 - 4:56pm — Kathleen

DJ Thanks for your reply.

DJ

Thanks for your reply. Regarding your tachycardia. I too had the same problem. Don't know if you have officially been diagnosed with anything as to what causes this, but in 1997 under the care of a really good GP, good because she had had chronic fatigue herself, I was referred to a cardiologist at Royal North Shore Hospital, they aren't so sceptical of chronic fatigue at North Shore. He referred me on to see a neurologist who did a tilt table study and it was confirmed that I had Postural Orthostatic Tachycardia Syndrome. Might be an avenue for you to explore. I am on medication for this now and I attribute this to the disappearance of my chronic fatigue and road to recovery.

Cheers
Kathleen

Wed, 06/08/2008 - 8:19pm — DJ

Thanks Kathleen for your

Thanks Kathleen for your reply. My tachycardia is inappropriate sinus tachycardia (IST) but there could be POTS involved as well. It's great that you were sent to a good cardio who diagnosed it. I heard of a cardio at RNSH myself who dealt with IST but he wasn't interested in treating me so didn't explore or test for POTS or any other related conditions. The reason why I felt was because depression was on the medical history of my referral letter so the appt seemed to be needing to justify that.

I had glandular fever in the early 2000's so assumed my fatigue was post viral but after dropping to very part time work and feeling a lot better I thought that was behind me but then the fatigue reoccurred with doing many hours so I sought GP assistance. The GP I saw suggested it and my headaches were due to depression and I was stupid enough to say "I'm willing to run with that if you are willing to treat it" as I felt maybe it is worth trialing a course of anti depressants to confirm or deny and if it was and fixed it great. Then shortly afterwards I had an episode of chest pain, went to hospital where the fast HR was picked up. The first cardio didn't really explain what the problem was but after research I figured it was the IST and found the second specialist.

It's great that having the correct diagnosis and treatment has helped to reduce and resolve your fatigue. Even though I'm far from optimal treatment I must say at least knowing what it is has helped as it's helped me to understand what can help and make it worse so I can adapt to it and I saw a naturopath where we sat down and went through the theories and he prescribed a herbal mixture which has helped and suggested potassium and magnesium, so it's given treatment guidance to alternative practitioners.

drugs