Aftermath of first Rheumy appointment - Mostly positive

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Veteran Member

Date Joined Jun 2010
Total Posts : 554
   Posted 8/24/2010 10:35 AM (GMT -7)   
This morning at 9:am I had my first Rheumy appointment. I must be sicker than I like to believe, because he kept repeating, "Yes, that's fibromyalgia ... that's fibromyalgia .. .and that symptom is fibromyalia ..." I'd barely told him the half of it at that point, but he just kept nodding his head. I was a little mystified, actually, because I thought I was sort of GOOD for fibromyalgia and that this would take him the whole hour, and a whole of tests before he uttered those words. I'm relieved, but not used to this.

He spent at least an hour with me. Amazing.

I bought along a 6 or 7 page chronology of all the major illnesses, accidents and injuries since 1980. I listed all my symptoms. I listed all the things I currently do to help myself. He actually READ it all right in front of me --- but asked me first if I'd prefer to tell him, or have him read it. shocked (I said him reading would be faster.)

I also printed out three web site reports detailing that viral study for chronic fatigue and let him keep those. He'd only heard a headline but was glad to have more details. The only negative was that he sort of dismissed the idea that it could be viral, because he explained when these illnesses were new, they'd given patients all sorts of antivirals and it made no difference whatsoever. He did say new antivirals might be different - but he really didn't think it was viral. (Personally I'd like to follow the research as I'm not sold it isn't viral yet.) He did talk about neurological causes - which I thought were brilliant and made loads of sense - but in my fog I can't currently remember the details to repeat them to you.

He definitely thinks ibs is an extension of fibro - in that it is overstimulated .. umm.. did he say nerves endings or whatever? (Brain fog - sorry!) I know he talked about genetic defects or weaknesses or predisposition, too. (fog!)

He is running loads of blood work to rule other stuff out - autoimmune, arthritis, etc, but he said he really feels confident those will be negative and it is true fibro I have.

My creepy crawly sensations, especially at night, seemed a big hit for his criteria - and I didn't know it was that big of a deal. (Not restless leg, just fyi.)

He had interesting thoughts about family histories. One thing we talked about was how in the old days, someone might be an alcoholic and they'd say the alcoholism is the reason for their health being bad. When in reality, those people were self medicating with the alcohol BECAUSE their health was bad ... and often it was fibro. They said in the old days they'd say, "Well that person also works hard labor - that's why they feel that way and drink so much" - but it was fibro undiagnosed. That actually describes my father! My father and his mother had terrible stomachs, too. Interesting, no?

One negative - if it didn't relate to fibro, he dismissed any mention of other problems, like my hives. I sort of would have liked to have wrapped up a few other issues, but I guess specialists are like that. He did say though that people who have dermatographic uticaria (skin writing - or hives from scratching the skin) tend to show up often in fibro - it is just another example of the overactive neurological or whatever word he used. (I wish my brain had better recall!!)

I could go on - but I better wrap this post up so you're not reading all day.

He told me to take at least 1,000 to 2,000 units of vit D per day. He offered me Savella - which he said he completely understands if I do NOT take with my extreme chemical and medicinal reactions.

I did not ask about disability at this appointment because the timing wasn't right. However, I don't think it will be a problem if I ask him to back me up when I do apply. So I feel good there.

Lastly, I have to laugh at his nurse. While she was extremely warm, I'm not sure if she was the sharpest tool in the shed. I'm down to 113-114 pounds after being so danged sick. She said, "If I were you, I'd be eating milk shakes night and day - round the clock!" I said, "Lactose." She said, "Oh, well then PIZZA! Eat it for breakfast, eat it all day long - and milk shakes, too! That's what you should do." I just stared at her in total shock. This is a nurse? Well, at least she was friendly!!

Overall, it was a good appointment. My only qualm is that he is very medicinally oriented for solutions, but at least he understood with my sensitivities I have to watch it. He was really blown away when I told him how little of tylenol and benadryl make an effective dose for me.

I give it all a thumbs up.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

Post Edited (TheChickenPrincess) : 8/24/2010 11:53:37 AM (GMT-6)

Regular Member

Date Joined Aug 2010
Total Posts : 77
   Posted 8/24/2010 12:16 PM (GMT -7)   
oh i'm so glad it went so well for you!!!!!yeah that's funny about the nurse. Not sure I could've kept my mouth shut!

Veteran Member

Date Joined Mar 2010
Total Posts : 1286
   Posted 8/24/2010 1:05 PM (GMT -7)   
Sounds like you found yourself a winner with the doc, not so sure about the nurse
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 8/24/2010 1:50 PM (GMT -7)   
Chick,I'm so glad that your appointment went well. It's great that your rheumy
took the time to look over everything. Knowing that he spent an hour with you is a
good sign. I hope everything works out well for you. Finding a good doc is half the

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 8/24/2010 2:39 PM (GMT -7)   
I am the same way with medicine. I usually take a childs dose and do fine. An adult dose of advil, etc., makes me feel drugged. I was the same with Savella. I was only taking 25mg two times a day. 50mg twice daily was way too much for me.

Good luck with everything. I'm glad you had a good appointment. It's nice when doctor's actually understand. I love my rheumy and his staff too. It makes a difference when they are down to earth and have compassion.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined May 2010
Total Posts : 1556
   Posted 8/24/2010 2:39 PM (GMT -7)   
Hi princess, Im glad you found a good dr. that listens and explains things to you. I think with the nurse I would have busted out laughing when she repeated the milk shake solution. Have you ever tried like the frappes at McDonalds or MooLattes at Dairy Queen, I can drink them and not get sick but dont even try for a shake anymore becuase I know I will get sick. Hopefully when I go looking for a new internal medicine doc i can find one thats close to being as good as my old one. Once again Im glad you found a winner.
Gentle Hugs
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Regular Member

Date Joined May 2010
Total Posts : 167
   Posted 8/24/2010 2:40 PM (GMT -7)   
Chick, I'm so glad for you!  I too had a good Dr visit today. So have you officially been diagnosed with fibro from another doctor, with the Rhuemy confirming it? Just wondering. And he didn't do a tender point exam?  My appointment with a rheumy is not for 7 months!! I may call around in a nearby town to see if I can get one sooner.
Anyway, I am sooo happy it went well for you.
   Blessings, Debbie S

Veteran Member

Date Joined Jun 2010
Total Posts : 554
   Posted 8/24/2010 5:06 PM (GMT -7)   
Thanks very much everyone.

Cajun I'm so glad you told me about your med issues, too. It makes me feel better. I'm like you with the kid sized doses.

Debbie S - Thanks. I was officially diagnosed about 5 or 6 years ago but my primary doc retired. I was told that for disability success, it "helps" to have a specialist confirm your diagnosis. It sometimes also avoids the SSDI board from sending you to one of their doctors - who are often not be trained at all in the field of your health concerns. My new primary doc confirmed my suspicions about it - she said a Rheumy would carry more clout in my case. I need all the help I can get so I went for it. He did a tender point exam. I told him they used to be far worse and I didn't expect to react that strongly - well - he got me on the front above your chest and I nearly doubled over with my fast negative reaction. Surprised even me. If your application for ssdi is already in progress, it would help, I think, to get the rheumy's opinion in while they're reviewing your case. (This is the opinion of someone who has NOT gone through the process yet - so take it with a grain of salt.)

Shirley - isn't that a hoot about that nurse? And the pizza would get me either with the msg in the sauce, the lactose in the very young cheese, or the acid in the tomato sauce! Thanks for the ideas on the drinks, I'll try those after my food tolerances have gotten a little better (after that last stomach issue I'm still sort of wimpy on foods!) I'm hoping if I can tolerate the goat milk with lactase drops that I can add a lot of fat and calories that way - fingers crossed!

Thanks Robin. I'm glad I was able to see him before the insurance changes over. This is a big win for me.

GSDgirl and Javamommy - yeah, that nurse .... wow! LOL At least she had no bearing on my health decisions.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!
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