View Full Version : Rheumatologist's fob-off!
02-07-2009, 07:19 AM
I have been posting on the Peripheral Neuropathy board for 18 months. Last week I went to see a Rheumatologist because of my ongoing and increasing joint pain/stiffness, muscle fatigue and multiple other symptoms.
After I outlined all my symptoms and history over the past 18 months or so, the Rheumatologist went through an RA (Rheumatoid Arthritis) and OA (Osteoarthritis Arthritis) discussion which was quite good. Then after I asked some more questions, she went over to her filing cabinet and said, "I wasn't going to raise this" as she handed me an information sheet on Fibromyalgia Syndrome. She reiterated that she wasn't going to raise it and made a very short comment or two then finished the consultation.
At the reception desk she told the receptionist that I didn't need another appointment!
I have to say as the days have gone on since then, I have been intermittently puzzled and angry, as I feel I have been left 'high and dry' with this comment and where do I go from there?
She did not check any tender points (if that is what they do) so I am nonplussed. What do I do with this comment??
Is there any merit in 'being diagnosed'? I just don't know quite what to think now in this regard!
02-08-2009, 02:46 AM
hi Megan, you have been left high and dry by this doctor. You would expect at least some sort of advice on where you go next.
There are some funny attitudes in the medical fraternity towards illnesses with which they are not familiar, or which they don't believe exist.
Easier to say it is all in the mind than try to treat a difficult illness!
I suggest that you read up on Fibromyalgia, find a good and reputable symptom list, and then compare yourself to it.
You then need a diagnosis guide to see if you meet the criteria.
Armed with this, see your GP.
You may be able to find a Fibro group who could recommend a knowledgeable GP.
My daughter has ME and as far as we can find out, there are only two Perth doctors who will treat patients with it.
Once again, there is a lot of disbelief and confusion about this illness, and it's not helped by insurance companies employing doctors to say it is psychological, not physical, thereby avoiding a lot of payouts. Very sad but true.
I went to a pain seminar two springs ago...one hour was devoted to the new information on Fibro.
Trigger points are no longer used for diagnosis.
Dr. Clauw who gave the lecture said medical doctors are being
educated not to do trigger pt injections or tests anymore.
Fibro is considered a central pain syndrome, which may be triggered by peripheral trauma or pain (arthritis) and even vaccines. It has to do with pain perception in the brain and is thought to be genetic. The metaphor given is that it is similar to keeping volume very high on a radio.
You can read more about it here:
This is new stuff.
02-09-2009, 01:27 AM
Hi, I'm Crystal
Yeah I know, my rheumatologist was one of the original 2,100 doctors who originally came up with the criteria for diagnosing. He still checks the points anyway. I love him. But he's up on current research and he's a dear little man. I love him. I'm in upstate NY.
A lot of them still use it as a tool it's just not the make or break thing, they look at all the other multiple symptoms, mine are a page long and I'm sure yours are too.
I'm just excited about SAvella, first drug FDA approved just for us FM sufferers. About damn time too. Google it, you'll find lots. Good luck.
02-09-2009, 01:28 AM
Yeah, she's a dumb lazy ***** who needs to do more research and not be such a slacker. In response to Megan.
02-25-2009, 12:09 AM
In some ways I am still fuming about her (the Rheumatologist's) manner and attitude.
I have had a lot of other things going on this past week or two, so haven't been back here to respond. Just had oesophageal manometry done yesterday - and what a horrible test that was, as well as, for the past 24 hours had pH monitoring and got the tube out this morning.
Earlier last week I visited my Endocrinologist for my regular visit and she was quite excited that the Rheumatologist had written to her and said that she thought I had Fibro! I think I must have looked a bit disgusted as she asked me what was wrong. I told her about the off handed way that the Rheumy said to me "I didn't really want to raise this but I think you may have Fibromyalgia....." and my Endo said "well that wasn't a good way of approaching it was it...it sounds like she doesn't really believe in it". I had to agree with her.
Anyway I think the Endo also thinks it is a high probability that I do have Fibro and she said to me "you know it IS a real condition - just a difficult one to diagnose". In her handbag she had a brochure to give me for a seminar day in March on Fibromyalgia, which she recommended that I go to. She's a real keeper!
My General Physician, who I will see again next week, does not believe I have Fibromyalgia but some other exotic immunoglobulin deficiency or autoimmune issue. This guy has been described as "like a dog with a bone" when trying to find the cause of people's problems. He is also liaising with all the other specialists.
My General Practitioner just ignores all reference as to why I have joint & muscle pain and 26 other symptoms! He did diagnose Peripheral Neuropathy in 2007. Has not otherwise been much help to me and everything is "I am at my wits end".
My Pulmonologist (a lung transplant Surgeon/Professor) has focussed on diagnosing and treating my lung condition and he also thinks I have an immune deficiency. I was diagnosed in September 2008 with Bronchiectasis of both lungs. He is excellent!
My Upper GI surgeon diagnosed Gastroparesis last month (Jan 2009) and is now investigating GORD/GERD. Very thorough and meticulous diagnostician - I think I trust this guy!
So in many ways I am in good hands. In some ways I feel way better than I did 12 months ago (due now to correct management of lungs and stomach problems), although many other things are persisting and other new symptoms are emerging....and each day varies somewhat, energy-wise.
Whether it is Fibromyalgia or not I cannot say for sure, although a lot of my symptoms do check off as being consistent.
02-25-2009, 09:34 PM
My humble opinion is that it is not too important to be diagnosed but to be helped... at least in cases like fibro...
My doc actually never mention names, I mean, of the illness... He is too funny. Love him. My mom has diabetes, and he was like "call it like you want but you have high sugar levels and you have to take this, do this etc..."
He never mentioned me fibro or osteoarthritis but, he gave me lyrica, celebrex, b complex, zinc, etc... :p
So, yeah... I dont care much about the name, but the treatment doctors give so...
Just my humble opinion.
Are you taking anything for your aches ?
03-14-2009, 10:32 AM
Megan, I went to a rheumatologist and I got the same approach as you. Basically made me feel like I was crazy! I have so many symptoms of so many different things that I don't know where to even start. What symptoms do you have...I saw that you have 26 different symptoms. Right now I can't straighten my pinky finger on my R hand (I'm L handed) but there is nothing wrong with me (I think I some type of autoimmune affecting my joints). I wake every morning and I can barely move. My R hand has always been a problem but my pinky is absolutely horrible. It is actually starting to turn like the pictures in the Humira commercial. I'm only 30 and I'm scared as to what is going to happen as I get older. Sorry if I'm rambling but I just couldn't believe you had a similiar experience as me. BTW, I also had that 24 hr pH monitoring....worst experience of my life!
03-17-2009, 11:22 PM
I've got Fibro. And its just easy to have the meds to help with the
I have some of the trigger points.
I am just glad that it can be treated.
I also Have Fibro and have for probably 25 years. It took 17 years for a proper Rheumatologist to diagnose it. My case is considered severe and my Rheum. is also a 'specialist' in the field in the DC/Maryland area. He always checks my trigger points and does a physical exam of my joints, etc. as I also have inflammatory arthritis of my joints (Spondylarthropathy) just to see how severe my disease is at the time of my visit. Sometimes he surprises me. Please know that FMS sometimes tags along with other diseases, usually rheumatic or autoimmune diseases.
You need to find a good Rheum. that treats it. I did a lot of research to find my Dr. Also, many drugs are difficult to tolerate if you have FMS. I just got out of a bad reaction to Savella. It takes time and many combinations of different drugs to find the best treatment suited for you. You should look to have a communicative and long relationship with your Rheum. so he or she gets to know you. It is a very important relationship.
I have found the best combination of drugs for my FMS is Mirapex, Vicoden, Welbutrin (I cannot seem to tolerate the FMS drugs), Verapamil and Ambien. I also take 3 mg of Prednisone and Humira for arthritis. Also Vitamin D since I have a deficiency. You may want to get that checked as it can cause muscle pain. Remember, this works for me but may not for another person. It is a very individual thing.
Sorry to ramble... I do know how frustrating things can be with FMS and I probably went through 30 doctors over the years finding a 'correct' diagnosis and finding someone who was actually expert and treated the disease.
Do your research on Doctors, preferably choose a Rheumatologist and be sure he or she treats fibromyalgia. Travel to a nearby city if you have to and if you don't like that Dr. fire him or her and find someone else. You don't have to take any cr.p. Remember you are the boss.
I hope you feel better,
06-27-2009, 08:25 AM
I had a consultation with another Rhematologist last week who has a special interest in Fibromyalgia. He seemed caring and said my case was very complex but believes that I probably do have FMS.
He increased my dose of Lyrica at night and wants to increase my morning dose in one month when he sees me next. He is also a great believer in the mind/body connection and will probably try to steer me towards doing some meditation.
This guy is some distance away but probably well worth the travelling. I guess I'll know more how I find him after my second visit. Second visits with a new doctor are always the clincher for me for some reason - they either go well or go terribly!!
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