My first visit with a rheumatologist

[Marc]

Hello friends, I have an appointment with a rheumatologist next week although I have no doubt I have fibro. Literally every description I have read depicts what I have been experiencing for about the last two years. I can even tell you the exact moment my brain/CNS became compromised (in my opinion, of course, but I have absolutely no doubt this is true and real). It was during the last of several attempts over a number of years of trying to taper off an anti-depressant called Effexor. I was doing a micro taper (opening the capsule and taking out a small number of beads etc..) which had been going fairly well until I hit a wall and everything went to hell. I was sitting on the couch at about 2 a.m. experiencing hellish withdrawal related to this drug when I felt what I will describe as a ball of fire slowly descending from the back of my neck down my spine while radiating a burning aching sensation throughout every major muscle group throughout my entire body. From that point forward, my body and joints ached/burned, some days worse than others with periods of relative relief and then flare ups that last several days.

I guess my question is, what can I expect from a rheumatologist? What can they really tell me that I/we don't already know? I'm quite accustomed to being gaslighted by psychiatrists and GPs, most of whom are clueless (IMO) to how anti-depressants work and what they can do to one's CNS. My wife has RA and it is her doctor that I am seeing. My wife likes her doctor and is happy with the treatment she has been receiving. I realize fibro and RA are apples and oranges, so I'm keeping my expectation quite low. I know that yoga-like stretching, walking, and moderate aerobics have been a great help for to get through each day. I'm sure there's much more on this site I need to learn about and will definitely explore. For now, though, I just wanted to break the ice (so to speak) by introducing myself. Thank you so much.

Marc
(60 year old male)

 

[Ketch]

Hello & Welcome!

For me the appointment became many, many more appointments to the rheumatologist and to neurologists, sleep studies, physical therapy, various tests and scans, labs etc. Years worth of appointments, prescriptions, MMJ, supps, testosterone, ointments, and oils. Yoga, tai chi, meditation, acupuncture, TENS, cupping, massage, so on and etc. So, it was the tip of the iceberg where "official findings" lead to diagnosis. This then gives a starting idea to attempt to alleviate it, and this quest becomes your life. So far, it has meant from walking with a cane (when I could) with less than zero energy and horrible constant pains with a horrible attitude to match, to walking unaided in managed pain, managed energy with extremely reeled in emotions. A trade well worth it that started with a rheumatologist. May your quest be successful at each turn!

 

[Wivenswold]

Good luck. I would take time to complete the American College of Rheumatology's Fibromyalgia test. The test was devised because the old "tender points" test that a lot of Rheumatologists in the UK still use isn't sufficient evidence of Fibro. Everyone has "tender points", ours are just more tender. I've linked a copy of the test below.

Another simple test the Rheumy can do is check your temperature, most Fibro patients' bodies run at lower body temperature, mine is pretty constant at 35.3oC.

Finally, the Rheumatologist will likely want to rule out a number of nasty conditions before giving a diagnosis of Fibro. Arthritis is top of the list. So let them know whether resting immediately after activity reduces pain, in arthritis it does, in Fibromyalgia it doesn't. In fact, too much activity can lead to a condition known as Post Exertion Malaise, so learning your new limits will be one of the most important jobs you've got over the coming years.

It gets better, it gets easier to work around but there will always be frustration and set-backs. It may not hurt to ask your GP for a few sessions with a Psychiatrist and then a Cognitive Behavioural Therapist. Both will give you loads of tricks to make your life easier.

 

[Marc]

Thank you Wivenswold, much appreciated!

 

[Marc]

Thanks so much, Ketch!

 

[JayCS]

Hi Marc, and a warm welcome to our forum - always good to have a few more males around!

Hello friends, I have an appointment with a rheumatologist next week although I have no doubt I have fibro. Literally every description I have read depicts what I have been experiencing for about the last two years.

The problem with that and also an answer to what to expect from a rheum is that our symptoms are common to quite a few other "invisible chronic pain syndromes". So as Wivenswold has said

my brain/CNS became compromised ... trying to taper off an anti-depressant called Effexor.

How strange that your very slow taper should have gone wrong. Have you any ideas on why? I only know that it's got a higher risk of discontinuation syndrome than other anti-depressants, but what you were doing sounds perfect. Interesting to me is that the effect seems to be an overly reduction of serotonin (as well as of norepinephrine), which I definitely suffer from. So my idea would be trying supps that increase serotonin, like me having quite a lot of help from the amino acid GABA, which works very directly inside of minutes to hours.

I similarly went thru all the stuff @Ketch has experienced, except didn't pull it thru with MMJ, after CBD oil hurting. And I condensed the "years" into essentially 1.5 years, working on it "full time" (50 docs to sort out all my various issues). But aside from that it sounds almost exactly like me talking!

Hi and a warm welcome also to you, @Wivenswold! Lots of good pointers there.

The expression "test", which you've used, has been confusing us a bit on various threads, as "there is no test".
And actually the main site here has this ACR "test" (and also calls it that), in case that's easier for you to do than the pdf.

Everyone has "tender points", ours are just more tender.

I think it's quite a few things, but more that they are unreliable, sometimes there, sometimes not. They were actually "tending for" the amount of tenderness by using a set pressure of 4 kiloponds.

Another simple test the Rheumy can do is check your temperature, most Fibro patients' bodies run at lower body temperature, mine is pretty constant at 35.3oC.

Ooh, interesting, that! Mine 35,5°C (95,9°F). Getting MCAS set off by the jabs caused a "temperature" of often 36,5 (don't know if that'd could treble for us? .
Actually, tho, I've tried to research this and found absolutely nothing... any pointers from your side?

 

[Marc]

"How strange that your very slow taper should have gone wrong. Have you any ideas on why?

Thank you, JayCS.

As to the above question (of which I am referring only to Effexor/Venlafaxine and not any other antidepressant), most people should be able to taper off the drug if they diligently employ the micro-tapering method and follow the guidelines established over the last 30 years by long-suffering Effexor users with the help of a smattering of compassionate doctors, researchers etc... The American Medical Industrial Complex has not acknowledged the extent to which Effexor users can suffer when tapered according to the pharmaceutical mfg. guidelines which involve decreasing at 50% intervals etc... Some of us, however, who have been on the drug for decades and had been subjected to inappropriate tapering (in my case, three times with three different doctors) only to be told the hellish withdrawal was from my "disease" and not relevant to the drug, may have a much more difficult time regardless of how slow they taper. I appreciate your suggestions with supplements, but my last attempt at tapering was so horrendous that I decided to just stay on the drug.

 

[sunkacola]

@Wivenswold, Welcome to the forum. I need to tell you that your post was edited to remove the attachment. Please don't attach things to your posts, as outside links and attachments are not permitted on this forum. Here are the forum rules for you to read. Please familiarize yourself with them to avoid having your posts edited or deleted. Thanks.

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[longtimer]

Hi Marc

I was trying to get off another anti depressant called Cymbalta with the slow reduction method and I believe that because I was on the drug for about 10 years, it was very difficult to get off. These drugs actually change the way your brain works. Every little reduction sent my body into a spin so I stretched out the reductions and waited til I felt ready to do it - sometimes it was months. I managed to reduce my dose by half, and was starting to go down from there when I decided I wasn't physically able to go farther. I was experiencing really heightened pain and nightmares, and other withdrawal symptoms so I kept it at the half dose for the last few months. When, and if, I feel better, I can try again. These drugs are powerful, and doctors are well meaning when they prescribe them (I hope) wanting to alleviate your suffering - but they never discuss the down side to drugs.

I eat healthy, and I try to do yoga every other day. I also do Vagus nerve exercises that seem to help calm my nervous system (I've been under a lot of stress). To exercise at all, I make myself do it - and it does help a bit. But there is no way that any of this cures my fm - I just keep managing it as I do with everything now - day by day.

I hope you find something to help you - just know you aren't alone.

 

[wiserlady]

Hi Marc, I had my first visit to a rheumatologist in December and was very down hearted after. I have more knowledge and experience of doctors and medical matters than most and research things thoroughly so had prepared myself for whatever before I went. I am a 64 year old woman. My symptoms included painful shooting pains feet and hands, painful wrists, unable to open jars or hold a cup of fork etc easily, a lot of tingling lower legs and a very droopy right eye lid. Yet at the end of the long chat he said he thinks it is fibro or pain.
I am not sure how "pain" explains most of what I told him and I really would not see the point in travelling a long way to see someone just to be told I have pain, I would know that already!! I am now waiting for what he calls nerve and muscle tests.
He told me that he could only give me pain killers or send me to someone who shows me how to do very gentle exercise.
I really cannot fathom this. Why would I travel a long way just to be shown how to exercise?
I can go on YOUTUBE to see this, and I can work it out myself. I have already been working out an exercise regime to do each day and been doing it for months. I need to do exercise in 10 - 20 min spurts anyway, so there is no point in travelling a long way just to do 10 - 20 mins! As for pain medication I researched it and can get that off my normal doctor with a simple phone call, then delivered by the chemist the next day.
Far better than waiting up to six months or so and travelling a long way for the same thing. The idea someone has fibro seems to be to be just a blanket term that they give to a collection of symptoms they do not fathom anyway, not a proper diagnosis. I won't take anti depressants of any sort, partly because research told me that with certain varieties of them they can make it more likely you get dementia later. But I do take ashwagandha sometimes and valerian root sometimes which includes GABA serotonin to help sleep or relax. I just find I cannot take it every day, once a week or so. I think we have to be our own doctors to be honest, everything we need to know is online and it is far more reliable and quicker than waiting for someone else to guess things. I hope you feel better soon.

 

[wiserlady]

I use natural serotonin regularly, ashwagandha and valerian at different times for relaxation / sleep, once a week usually. They include gaba, serotonin which is natural. There are many other things which do too. It's a vast subject which would take you many hours to research online, the doctors do not understand or accept natural serotonin though.

 

[Marc]

Thank you so much, Longtimer. I really appreciated your words. My experience sounds almost identical to yours. I waited months between each reduction and hit a wall after about 2 years. I kept waiting month after month to stabilize but I just got worse. I literally became an invalid (arguably dying). It was during this hell that the FM started. I also reinstated to half the dose which is where I remain. Yoga and moderate aerobic exercise (on a stationary bicycle) definitely help. I will check out vagus nerve exercises. Thanks again!

 

[Marc]

Thank you Wiserlady. I know exactly what you mean regarding doctors' attitudes towards conditions like FM (and IBS, which I unfortunately have had since age 9, before the useless term was invented...I'm 60). We have to be our own advocates, I've realized. No doubt there are functional MDs that understand what we're going through, but in America you won't find one listed on any health insurance plan and will therefore have to fork over $400/visit etc... You are indeed wise not to take an antidepressant for an off-label condition such as FM. I have known several women who were given the AD I was given for peri-menopausal pain and migraines etc... They didn't help and they were stuck going through the kind of withdrawal hell I had to endure. Thanks again!

Marc