Those of you who go to a Rheumatologist, please weigh in

[Jean in Newcastle]

I'm having symptoms that my primary care doctor (an internal med. doctor) feels is beyond his scope of expertise.  He wants me to go to a rheumatologist and gave me two referrals.  When I called the first referral, I was told that this rheumatologist will see me but if he thinks that it is fibromyalgia (what I was diagnosed with 25 years ago) then he cannot treat me but will refer me to someone else who "does that".  I was told the same by the second rheumatologist.  Is this common?  I thought that rheumatologists treated fibromyalgia?  This may or may not be fibro - as I said, my diagnosis was 25 years ago and lots has changed.  I've been mostly treated by naturopathic doctors (with varying success) since I had bad reactions to the fibro drugs of the past (mostly just anti-depressants at low doses).

 

My symptoms may or may not be fibro:  severe joint pain, "acidic" searing pain in my muscles, swelling up to the point my eyes are just slits and my bp is quite high, severe fatigue.  

 

Thoughts?  Suggestions?  Advice?  I'm at the point now where I'm not very functional and I have no idea how I'm going to school my kids this year if I'm still at this point in a month from now.  

 

Also - I made an appointment with the first doctor but did not ask if the second doctor could take me sooner (since I was told the same story about not treating fibro itself).  Would it be bad, if I called the second doctor to see if she could get me in sooner and went with whoever saw me first?  

[Arcadia]

My mum had been seeing a rheumatologist for more than 10 years and I went with her. She has rheumatoid arthritis.  At the first appointment, blood test and X-rays were done.  The X-rays were of her hands which was swollen at the joints and also her knees.  It took about two years from onset for the blood test to come back positive for rheumatoid arthritis, however newer blood test might be more accurate. The X-rays do tell the story so the rheumatologist started her on RA drugs and monitor the progress.  She has to do a blood test at every checkup to monitor for possible liver damage.

 

"Fibromyalgia can be hard to treat. It’s important to find a doctor who is familiar with the disorder and its treatment. Many family physicians, general internists, or rheumatologists can treat fibromyalgia

...

For More Information About Fibromyalgia and Other Related Conditions: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health
Email: NIAMSinfo@mail.nih.gov
Website: http://www.niams.nih.gov" (http://www.niams.nih.gov/Health_Info/Fibromyalgia/fibromyalgia_ff.asp)

[Live2Ride]

I have osteoarthritis...so I'm not sure I can answer your question.  I would presume that a Rheumatologist would run some tests and then discuss possibilities (that your primary doc hasn't already done). 

[Tap]

I don't know anything about fibro and who treats it but I can say that when I was struggling with my back, I stopped telling new doctors, about my old doctors opinions/unverified diagnosis.

 

I would have the needed items sent to the doctor: lab results, films and just a general referral written when needed.  I would ask my PCP to not include any information in the referral that would contaminate a new diagnosis.  I found it was much easier to get a new doctor to use their particular expertise when they saw my case with fresh eyes and without having to worry that they were conflicting with another doctors diagnosis. 

 

When asked by the new doctor about my history, I would give symptoms but no diagnosis.  Once I had a doctor push me a bit and when I explained why I was answering the way I was, he completely understood.

[Jan in SC]

I would go to the one who can see you the soonest. I would explain your symptoms and not give a past diagnosis. You want the doctor to be as open minded as possible when evaluating you.

[serene]

Recently when we met a new rheumy, he told us that rheumatologists as a whole are distancing themselves from treating fibromyalgia. They are leaning toward it being a psychosomatic illness. He told us he doesn't treat patients diagnosed with fibro, but also couldn't direct us to a rheumy who would, or another specialty that might have additional insight. Of course, he doesn't speak for *every* rheumy.

[Jean in Newcastle]

They are leaning toward it being a psychosomatic illness.

Please tell me this isn't so!  Now I wish I hadn't even mentioned the word.  My regular doctor can feel changes in my muscles etc. when I'm in a flare.  The thing is, when I was diagnosed 20 plus years ago, they were saying it was all in your head.  Then the tide seemed to turn and it was being taken seriously.  I hope the tide isn't turning again.  Of course I'm not 100% sure it is fibro.  Some symptoms match, some don't.  

[Jean in Newcastle]

I don't know anything about fibro and who treats it but I can say that when I was struggling with my back, I stopped telling new doctors, about my old doctors opinions/unverified diagnosis.

 

I would have the needed items sent to the doctor: lab results, films and just a general referral written when needed.  I would ask my PCP to not include any information in the referral that would contaminate a new diagnosis.  I found it was much easier to get a new doctor to use their particular expertise when they saw my case with fresh eyes and without having to worry that they were conflicting with another doctors diagnosis. 

 

When asked by the new doctor about my history, I would give symptoms but no diagnosis.  Once I had a doctor push me a bit and when I explained why I was answering the way I was, he completely understood.

Tap, they are sending me a health questionnaire in the mail.  Do you not fill in diagnoses on the form if it asks if you've ever been diagnosed with xyz?  

[Tap]

Tap, they are sending me a health questionnaire in the mail.  Do you not fill in diagnoses on the form if it asks if you've ever been diagnosed with xyz?  

yep, that is what I do and what I am doing right now, as I get ready for rhumatologist visit.  LOL 

 

If they ask if I have asthma on a form, I say no, but then under 'other' I put something like "occasional SOB (shortness of breath) with specific triggers relieved with albuterol".  If the doctor thinks it is important, then I figure they will ask. If they ask me about it, I tell them..."I use albuterol in the winter when I go from warm air to cold dy air and fine, concentrated particulates like dry wall dust will also cause me to get a lingering cough.  Albuterol relieves the symptoms".  Recently I was talking to my PCP about this SOB/Cough and told him.  "I have been told I have symptoms similar to asthma or reactive airway, but have never had pulmonary function tests or spirometry to officially diagnose me."

 

I say no to migraines, but will add "intense headaches that make me light sensitive and nauseous.  Relieved with OTC pain meds".  

 

 

 

Here is the thing.  I have chronic pain in my back that started the week after an injury 4-5 years ago.  I have blown out L4 and L5 disks which have localized pain.  I also have sciatic pain and other nerve pain that radiates through my abdomen and down my legs.  If I just put "pain from herinated L4/L5" (my official diagnosis) it doesn't really address the issue.  I have found out that I have many food allergies and if I avoid those foods, my pain level is at least 70% less than it used to be!!!  I am beginning to realize that my nerve pain for the past 4-5 years, while coinciding with the injury, is actually more likely an inflammatory response to an undiagnosed autoimmune disorder. By prompting the doctors to actually talk to me about the pain, I have been able to get them to listen to me (and not just see a previous diagnosis) and refer me to rhumatolgoy. The PCP I saw last week and I sat and went through all of my symptoms.  We are pretty certain I have Sjogrens, but won't know until I see the Rhumatologist if that is what it really is or if it is something else. If I have diagnoses for all of my issues, they don't seem like much....once you put the symptoms together without then diagnosis, it is very clear.  

[Jean in Newcastle]

Thanks, Tap.  That is helpful.  

[Erin]

Have you gone gluten-free yet, Jean?

It seems to be a common, anecdotal connection for people that going gluten-free significantly eases both fibro and RA.  
In fact, a close friend's rheumatologist has been after her for over a year to try going truly gluten-free.   

(She gives up bread for a while, calls it "going gluten free," doesn't notice a difference so goes back to bread. )

[Jean in Newcastle]

Have you gone gluten-free yet, Jean?

 

It seems to be a common, anecdotal connection for people that going gluten-free significantly eases both fibro and RA.  

In fact, a close friend's rheumatologist has been after her for over a year to try going truly gluten-free.   

(She gives up bread for a while, calls it "going gluten free," doesn't notice a difference so goes back to bread. )

I've been grain free for months.  No difference.  I did go back on grains and some gluten when I went no nightshade because it was too hard to do both esp. when I seemed to see a difference with being nightshade free but didn't see a difference with being gluten free.  

[Tiramisu]

Recently when we met a new rheumy, he told us that rheumatologists as a whole are distancing themselves from treating fibromyalgia. They are leaning toward it being a psychosomatic illness. He told us he doesn't treat patients diagnosed with fibro, but also couldn't direct us to a rheumy who would, or another specialty that might have additional insight. Of course, he doesn't speak for *every* rheumy.

 

This isn't my impression at all. I think if rheumies are distancing themselves it could be due to the fact that research is showing more that there have been physiological findings, but they are not in the field of a rheumatologists field of expertise. I'm thinking mostly of a recent article in Pain, which I think is a peer reviewed academic journal. 

[Jean in Newcastle]

This isn't my impression at all. I think if rheumies are distancing themselves it could be due to the fact that research is showing more that there have been physiological findings, but they are not in the field of a rheumatologists field of expertise. I'm thinking mostly of a recent article in Pain, which I think is a peer reviewed academic journal. 

I read something lately that they are thinking it is more of a central nervous system problem?  So neurologists perhaps?  

[Tiramisu]

I read something lately that they are thinking it is more of a central nervous system problem?  So neurologists perhaps?  

 

The article that I read seemed to point that way. I've seen that there is a less recent article that the skin of fibro patients also shows differences. It could be in the neurons, can't remember exactly. Another recent article points to differences in the genome.

 

I read something recently from a respected medical website, and the way it described fibro sounded so similar to a processing disorder, but they didn't use that word. They talked about neurotransmitters playing a role in faulty transmission of neural signals so that pain winds up being perceived.  

[Jenn in FL]

S/O of Jean's telephone conversations... and trying to determine exactly who "treats" fibro or related symptoms 

 

Has anyone dealing with multiple symptoms, some of which are transient,  i.e. joint pain, severe stiffness, muscle aches, sporadic searing pains and whatnot had any success or experience with PT and excercise?  (I cannot take NSAIDS due to a GI issue which is also probably autoimmune related.) My current upcoming/referral appointment is with a Sports Medicine M.D. and I am just wondering... does this referral even sound reasonable?  My GI doc mentioned "it sounds like fibro" recently, but I think it may well be more like lupus :crying: I guess time will tell... 

 

What questions would you ask during the appointment?  Any and all input is gratefully appreciated!  Dealing with these issues is getting sooooo old!  :glare:

[Jean in Newcastle]

Jenn - I've had lots of trouble with muscle contraction.  My muscles would contract into a death grip and then I would have related pain and stiffness from that.  But exercise and PT didn't help because the problem was not just a matter of relaxing because the chemicals in my body that tell it to relax weren't there.  In my case, the doctor put me on prescription potassium because a deficiency there was the problem.  Before that, he checked my magnesium and calcium levels too because all of those chemicals work together.  I'm not sure from your post if you're experiencing similar symptoms, though.  

[Jean in Newcastle]

stupid double posts

[CupOCoffee]

My rheumatology group treats Fibro.  From all that I've read since being diagnosed, I got the feeling that more and more docs are accepting of Fibro as a diagnosis.  I guess it really varies out there.

 

Jean, I hope that you are able to find relief soon.  Much of what you describe is the way I feel as well (I loved your "acidic searing pain in muscles" description -- that is exactly what it feels like).  Of course I do RA on top of all that as well, and I wonder if that is why my rheummy treats Fibro.  Although, I don't t think so...

 

~coffee~ 

[prairiewindmomma]

---

[wingedradical]

<<They are leaning toward it being a psychosomatic illness.>>

 

Actually, the studies do not point to it being a psychosomatic illness. What does happen is that many doctors will diagnose any kind of chronic pain as "fibromyalgia." Some may be psychosomatic, some might be another disease, some might actually be fibromyalgia. There CDC requires specific criteria in order for anyone to participate in a fibro study. That criteria is not followed by most doctors who hand out the diagnoses. The problem is partly that people WANT a diagnosis (understandably) and fms is an easy one to give. 

 

Many rheumies still do treat fms, but I suspect those moving away from it are doing so because of the above and because it is so hard to treat and what you do for it does not resemble treatments given for, say, lupus or RA very much.

 

I've heard that the best treatment for fms is often a pain specialist. 

 

I have lupus and secondary fibro.

 

Also, as someone who has lived in multiple and states and 2 countries with lupus, it seems to me that rheumies tend to be a rather business-like lot - if they can't make you better, they don't want to deal with you.

[Tiramisu]

<<They are leaning toward it being a psychosomatic illness.>>

 

Actually, the studies do not point to it being a psychosomatic illness. What does happen is that many doctors will diagnose any kind of chronic pain as "fibromyalgia." Some may be psychosomatic, some might be another disease, some might actually be fibromyalgia. There CDC requires specific criteria in order for anyone to participate in a fibro study. That criteria is not followed by most doctors who hand out the diagnoses. 

About the criteria question. I remember reading that the standard diagnostic feature was the presence of the tender points, but since the tender points can come and go, so they are not always relied on very much any more.

 

Part of the problem with the psychosomatic question is the emotional and cognitive problems that can accompany fibro, so it gets hard to tease it apart.

 

I don't have a fibro dx but my CNP suspects it. She wrote on the summary that if it's not fibro, it could possibly depression, and who knows, it could be. But my weird pain issues came before I started feeling so down. I think she started considering depression when I told her my pain can sometimes go away by taking a nap and re-setting my system. 

[Jean in Newcastle]

I passed the tender point test with flying colors.  But honestly, since I hurt everywhere, they could have pressed pretty much anywhere and gotten a reaction.  I have had these symptoms (with some variations for severity) for over 20 years.  I know that I have not been depressed for all of that time.  There are times when things have been particularly severe when I have been depressed but it has been totally situation dependent.  

 

Unfortunately for me, my pain usually gets worse with a nap.  I often wake up with searing pain.