View Full Version : Grrr...Dr. making me feel like a hypochondriac...
06-12-2008, 01:46 PM
I went to the Rheumatologist this morning for my first visit. Everything went ok, I answered lots of questions about my health and symptoms, then the nurse practitioner did a physical exam and talked to the Rheumy.
She came back and told me that my labs did not indicate an inflammatory disease but that I had a "good story" which indicated that I may have RA or Lupus. She then told me she wants X-Rays and more labs, etc. and to come back in a month. I ask her what I'm supposed to do in the meantime for the pain, the fatigue, and she just tells me to keep doing what I've been doing to function as best as I can. That's just the problem, I'm not functioning. I'm barely getting by and I'm miserable. My hands and wrists hurt so bad I want to scream. By the end of the day, my joints are all swollen and red- it's very noticeable. My appt. was at 9:00 am of course, so she didn't see that. My husband did go with me and was a good support and backed up my "story". Her telling me I had a "good story" just pissed me off to the extreme and made me feel like she was calling me a hypochondriac. Instead of saying I have a "good story", wouldn't it have been more medically appropriate to say that my symptoms indicate something is indeed going on and they need to investigate further? GRRRRRR!
So now I have to wait another month and then who knows what??? In the meantime I'm taking anti-inflammatories and pain meds so I can sleep at night becasue the throbbing pain keeps me up. Compression helps a little it so I got compression gloves and I wrap my wrists in ace bandages when I use the computer and in the afternoons-evenings when the pain is so bad.
This is just so frustrating because I've got a busy life with 4 kids and they're all suffering because of me. I feel like I'm being a crappy mom to them lately- especially the older kids since they're more self-sufficient. ACK!
Someone please tell me things will get better.
06-12-2008, 04:00 PM
Hugsss...I hear your frustration. Your first appointment sounds alot like mine was.
I think they forget that this is all new to us, we need to be let in on the game plan.
My family doctor put me on arthrotec 75 which does help quite a bit with the pain, but it can (and in my case does) cause swelling in the feet and legs.
For that I was told to wear compression socks. Which I do, but they cause my toe nails to cut in to my skin and I'm developing in grown toe nails. So I have to try and train them away from doing that.
I could go on, but it just seems that there is no answer that does not lead to more problems.
Have you started a journal? Document your pain and your swelling and what you are doing to manage it. Take it with you to your next appoitment, and give it to her.
If the pain becomes unmanageble, call her office and see if you can get into see her. Make a pest of yourself if you have to.
Hugs, hope you are feeling better soon.
I understand how you feel, I really do. You don't sound like a hypochondriac, but your doctor sure sounds incompetent. Have you considered a second opinion? That term "good story" would piss me off too. I had a rheumo say something similar to me. I stood up, looked at all the fancy diplomas on his office wall, and I asked him how can it be that all his diplomas were so big. He asks me what I mean, and I tell him that I don't understand how they can fold up these big pieces of paper small enough to have any room left in the box for the Crackerjacks. He looked like I just shot his dog or something. I fired him. These people sometimes forget that they work for us. I have alot of anger over things like this, as I'm sure most people here do. All I can tell you is be persistent. You know something is wrong. You know better than anyone else that your body is trying to tell you something. It's great that your husband goes with you, that can be a big help. Seek a second, even third opinion if that's possible. Arm yourself with knowledge, and write down lists of specific symptoms, when they happen, how long they last etc. Be an advocate for yourself. Many of us have been through, or are going through what you are. Come here and unload to your hearts content, we'll listen, because we understand. Hang in there, you will find an answer.
06-12-2008, 05:24 PM
Thanks guys. I REALLY wish I could get a second opinion or a third NOW. IT seems that Rheumatologists are few and far between in Sacramento area. There are only 3 that take my insurance and 2 work at this clinic I went to today. The other was scheduling out in September 2 weeks ago- I did make an appt. and I plan to keep it. These a**hats looked at the labs and dismissed me basically. My family Dr. has said the labs aren't reliable and that she's convinced I've got an autoimmune disease from my symptoms. She is great and I really like her. She also said that if it's autoimmune and I'm just a few weeks into a flare, the labs might not show anything yet, but that my SED rate was a clear indicator as well as my symptoms. The Rheumy dismissed my SED rate near 50 as "not something to be too concerned about yet." ACK!
I must say that I hated this clinic the minute I read their new patient packet they sent me in the mail 2 weeks ago. Their office policies and procedures plus the inability to get in touch with the office staff was a big red flag. Office policy #1: they will call to confirm your appt. the day before. They will not leave messages. If they can't reach you, they will cancel your appt. so someone on the waiting list can get in. The 2 times I have attempted to call this office, I had to sit there and redial for over an hour before I got through. BIG red flag!
I went in and the office was old, smelled like a convalescent home, and looked like nothing had been done to the place for 30+ years. It was dusty and there were cobwebs in the corners of the waiting room and in the office and exam room.
06-13-2008, 03:43 AM
Holy smokes. I feel so bad for you. I know how you feel though, because before I finally got diagnosed, I had been to several different doctors and you would not believe the things that I was told. I had one doctor tell me that I needed to go out and get drunk! He told me that there was nothing wrong with me and that I was worrying and stressing needlessly. Oh I was mad big time and I wanted to throttle him big time. I called him everything but decent and told him that he was the most incompetent fool I have ever had the misfortune of meeting and that he was not getting paid. I also told him that I was going to notify the medical board about his advice for me and you can believe I did just that. He got a warning and told that if he ever treated another patient like that that he would be in jeopardy of losing his liscence. I know this, because the medical board sent me a copy of the letter they sent him. I never did pay that fool. You have to stand up for yourself and seriously remind the doctor that you are paying them, so that that means that they are working you and have to listen and do what you want them to do. Do not let them walk all over you. God Bless and I hope that you find a good doctor.
06-13-2008, 08:22 AM
I am SOO SOORY you had to deal with that bull. I too have had one moron after another tell me I was fine/depressed/looking for pain meds - etc etc. You guys - why cant something be done about this? I mean, there are thousands of us out here who have had the same experience. It is HORRIBLE!!! So many of us needlessly wasting what could be a more productive life, based on the menial assumptions of incompetent doctors.
Kathy - good for you for calling about that doctor!! Hey Jennyfoo, can you call your family doctor TODAY and tell the staff its URGENT and tell him what happened. Ask him if there is ANYTHING he can put you on (even a dose of steroids?) until you see the next FOOL...Maybe he will feel bad and call you in something. I mean - steroids stink - but they will help with that inflammation for sure. Maybe it will help you even a lttle bit better?
OR, when you start to swell - go straight to the ER. Say "this has been happening for a few weeks - its unbearable. DONT tell them you saw a rheumy. 9 times out of 10, they will call them, find out they think youre fine, and send you home. Play "stupid". Who knows? Maybe there will be a doc there who is familiar with this stuff? Also, the ER - if they think its rheumatological - will send you home with a referral for one (they do that here - Im not sure about where you are). You know, when they send you home with the after care form, it will say "Follow Up ..." and they wil put rheumatologist. Or if one is on call at the hospital, they will have them come down to the ER to see you. They do that here in MA. I dont know...Im just SO MAD FOR YOU right now. Im just thinking of some possibiliites! Plese let us know how you make out. Stay steady!!
Love and prayers -
06-13-2008, 08:50 AM
Run, run and never look back...
They probably usually only treat the elderly..
If you have a good rapport with your family doctor, primary physician, I would ask her to oversee your health. They are very capable of doing it.
X-rays for what? I would go through your family doctor if the RheumBA suspects arthritis...
Did you get a copy of your results from the RheumBA, had they been sent to your family doctor?
The office probably smells of an old folks home because if like here, I being 47 it appears I am always the youngest in the office amongst the gray tops or no tops...
Though my RheumBA's office has conducted IT studies and wrote articles on it..I am not very confident with their care. I haven't been treated badly, only my time has been disrespected. Though he does give the ogle glare...taking any confidence one could have in him aways...d'oh.
They treat my symptoms...
06-13-2008, 12:08 PM
X-rays for what? I would go through your family doctor if the RheumBA suspects arthritis...
Did you get a copy of your results from the RheumBA, had they been sent to your family doctor?
X-rays are checking for joint damage from Rheumatoid Arthritis. She said she couldn't feel any fluid build-up to indicate arthritis- I'm overweight so maybe she thinks I just have fat hands? LOL! Actually, I only wear one ring size larger than when I got married and was thin- I do not put weight on in my hands and my hands have never had swelling problems. I even was able to wear my wedding ring all through my pregnancy 10 years ago. Right now my titanium wedding band(the only metal that I can wear that doesn't make me itch and get a rash) is stuck. Good thing that it's an urban myth that titanium rings can't be cut off(I checked). LOL!
I don't need X-rays to know there's something going awry with my joints. I told her about the popping in my joints- constantly, the grating noises in my wrists and fingers- cartilage is obviously messed up. She didn't bother to listen to the joint noise, just felt and squeezed all my fingers. She didn't bother to look at any of my rashes- I told her about the photosensitive ones on my arms and face plus the ones that appear to be discoid-like in my groin area and even on my face. She never once got up and close to inspect any of those rashes.
Any labs that have been done were done by my FNP(who works with my PCP and I adore her). I will CC her on the order of X-rays and more labs too. I will call her and express my dismay with the Rheumy and the treatment I received there and see if there's anything she can do to help. I have taken Prednisone in the past for Asthma and Bronchitis, so maybe she'd Rx it for me if I let her in on that info. LOL! Do you think I should ask for a referral to a Dermatologist to check out the rashes? It might be helpful in diagnosis.
I just hope I'm not dealing with a double whammy of Lupus accompanied by Rheumatoid Arthritis. Lupus alone doesn't do damage to the joints. ACK!
Last night I went to bed at 7:00(the baby's nap schedule got messed up so he went to bed early) and woke up at 11:00 with a horrific headache. I took Aspirin and Tylenol. Then, when I attempted to go back to bed at midnight, I realized I had made a HUGE mistake. I had taken Tylenol so now I couldn't take my codeine since it's got Tylenol. YIKES! I was up until 4:00 am because my head, hands and wrists were hurting so bad- aching, throbbing, and my sciatic nerve was acting up. What a nightmare! TGIF and I can catch up on some sleep tomorrow.
Oh, and now my hair is falling out! AUGH! Every time I run my hands through my hair, wash it, etc.- I get a bunch of hairs on my hands. I've never had this happen before. I just grew out my hair from a short do to past-shoulder length and it's the one physical feature I've always taken pride in and actually liked about me, my long, beautiful, naturally blonde hair(I'm 1/4 Scandinavian and the blonde is a recessive trait- I'm the only one in my family who's stayed blonde and not turned brown). ACK! I cried in the shower this morning as I rinsed and squeezed the water out of my hair and ended up with hair all over my hands. :cry:
06-13-2008, 12:44 PM
The rheumy was squeezing becuase she was feeling for swelling. When I first got sick, I did not swell that much (oh the good 'ol days). I saw three top rheumies in Boston at that time (professors at Harvard and Tufts) and NONE of them would even consider either RA or lupus without having swelling. They all said fibromyalgia instead, because I wasnt swollen, but I did have pain. It made me think of it when you said they squeezed you fingers, etc. As my disease progressed, I started to swell in my joints. Then and only then did they even take me seriously. I must say though, that they all ordered blood work - but it was all neg. Even my sed rate, CRP, etc was all neg then because I wasnt swollen. Im wondering if thats why she is not taking you seriously/being dismissive. I am stilll confused about the Xrays, because I dont believe they are an accurate way to check joint damage - just bone damage. Im pretty sure (could be wrong) that Xrays are not a test usually ordered for any autoimmune disease, including RA. I still think you should stick to your PCP - she sounds like she doesnt know what shes doing! Hang in there!
06-13-2008, 12:52 PM
I swell up BAD in the afternoon/evening. In the morning, not so much. By 4:00 or so, my joints are beet red and hugely swollen. My appt was at 9:00 am so of course she didn't see the swelling. ACK!
LOL! I just realize that I wear edema/arthritis gloves and aspercreme to bed. So of course she didn't feel excessive swelling. Makes sense.
06-13-2008, 12:52 PM
Hummm..your RheumBA seems out in the toolies...RA is an inflammatory disease or maybe she is conducting the tests to rule out RA....
If she suspect RA or Lupus, she should provide some form of relief in pain or instructions...are you only taking OTC?
Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) – These drugs are used to reduce inflammation and relieve pain. These are medications such Naproxen..Celebrex, Vioxx....Mobic
Analgesic Drugs – These drugs relieve pain, but don’t necessarily have an effect on inflammation. Examples of these medications are Ultracet, Tramadol..Lortab....
If she didn't... by your post I am assuming she didn't but she could have prescribed them as a prevention.
Info only...4000 mg is the maximum acetaminophen over a 24 hour period for an adult, well, unless you drink alcohol. Which reduce the amounts max drastically. Atleastt by half...2000mg, depending if it is more than two drinks. This drug is very taxing on the liver...toss booze in the mix...ouch. Injury to the liver....
My fingers, hands, wrists hurt, but no grading..just my knees and feet crack and pop...I have IT, SS and GERD....and a few miscellaneous nuisances.
06-13-2008, 03:16 PM
Oluwa's right (as usual, I think lol) - this rheumy is in the "toolies" (cant wait to use that phrase with my girlfriends!). An Xray is useless for inflammatory diseases. A dear friend of mine was Dxd initially with lupus, but it was changed to RA. She sees one of the top rheumies in the country (Brigham and Womens in Boston) and she has never had an xray (I called her and asked if thats something she has had done). Toollies it is. I dont take any analgesics, but I take alot of nsaids, and it does help a bit. Without it Im toast. I used to be on a lot of pain meds (narcotics) and as I posted earlier on another thread - they did not work out for me at all (long story, but pretty revealing! check other post if you like). oluwa is correct about the Tylenol, too. A couple of years back, I was getting sick nonstop for days. All I could do was sleep and vomit (sorry). finally, my husband made me go to ER. Well, I was in the beginnings of liver failure (no exaggeration) with LFT's in the 10,000 (normal is 0-40!). They attributed this to a toxic level of Tylenol. I was on Vicodin at the time, and I was taking way too much of it, and the Tylenol in it the Vicodin almost destroyed my liver. I was in the hospital for over a week and had to take the NASTIEST medication (I cant believe I cant remember the name of it right now!!) but it smelled like rotten eggs. Even the nurse (who is used to all kinds of smells, I assume) used to turn her head when she would give me my dose. But it removes the toxins from your liver. It worked, thank you Jesus. My liver started to replenish itself again, and there was no serious long-term damage. This is when the kidney doc came to see me, because my kidneys started to act up due to the overload from the defective liver. He said I had lupus. Two days later he said I didnt and that I needed a shrink. Thank you - please come again! oohhh boy - the crap we go through, huh? Anyway, hope you feel better soon, and do not give up hope. Some of us have been in limbo for years, but we finally get the help we need if we are persistent and dont take NO for an answer!! Take care of yourself...
Love and prayers,
06-13-2008, 03:59 PM
Thanks so much ladies. I appreciate the input. Perhaps they're wanting X-rays to rule out abnormalities in the structure of my joints or something. Who knows??? On the lab sheet RA is checked as diagnosis. They have to check some reason for doing the work.
I am on Relafin. I had anterior talofibular ligament replacement 18 months ago in my right ankle and had tendonitis problems after that. I developed stomach probs on Ibuprofin and can only take it for a week or two before my stomach acts up again. So I have an Rx for Relafin from my FNP. I would be completely non-functional without it. I misplaced the bottle last weekend when cleaning up my kitchen(forgetful and absent minded to the core lately) and didn't take it for 2 days. OMG! I was in so much pain I almost went back to the ER.
I have to keep a log of when I take my meds- the Relafin, the muscle relaxers for my sciatic and back pain, and the pain meds, or I forget to take them or when I took them. Hubby and 10 y/o daughter have been helping me keep track. I never had this problem before when I've been on meds. UGH! IS this what they refer to as the Lupus brain fog perhaps? I feel like a compete nitwit lately. Words escape me and I can't think of them, I stumble in conversation, and I feel like I've got my head in the loopy, spacey clouds. And that's when I'm not taking my pain meds. LOL! I try not to take them because I know I have an addictive streak(long story) and I have 3 siblings who are drug addicts. I have to be in severe pain to take them- and I try only to take them at night so that I can get some relief and sleep.
06-14-2008, 06:13 PM
Jennyfoo, I'm so sorry you're not getting taken seriously by your rheumy - that's just uncalled for - but it's sooooo common. You've gotten a lot of great advice by some of the wise and caring folks here. One of the best, I think, is to rely (for now) on your primary care doc. It's better to have the RIGHT primary care doc than to have the WRONG rheumatologist! And (as you've learned) some rheumatology practices just don't have much experience with autoimmune diseases other than RA. I hope your PCP can give you some relief, and maybe even help you find a specialist, it that's what you need. In the meantime, do all the research you can and stick to your guns - it's your health and your future - keep knocking on the door until someone listens!!! I'll be sending you good thoughts!
06-18-2008, 11:56 AM
Just checking how things are going...the hair shedding, the pain, the brain fog..maybe the fluorescent lights are aggravating your symptoms.
I know times while shopping, the minute I open the door and flooded with those blue buzzing lights, nausea, headaches, weak, joint pain..I have to leave...and sometimes if I wear my plate size sunglasses it doesn't affect me....depends on IT and SS want to do to me that day. Play mean?
Did you call your Primary?
Hope today is better...
06-18-2008, 03:19 PM
Thanks Oluwa for checking up on me. Hugs to you.
Yes indeed, the flourescent lights are making it worse. My rash flares up and after shopping at Target for an hour yesterday under glaring uncovered flourescents, I got a nasty migraine and just felt like crap. Hubby got dinner for himself and the kids and I went to bed for a few hours. The inflammation I've been having in my leg(sciatic) acted up BAD too- worse than the night I ended up in the ER thinking it could be a DVT. This morning my leg was swollen 3" larger than the other and I could barely get my birkenstock on that foot without adjusting the straps. My hubby is REALLY concerned, worried it is a DVT because he had one 14 years ago before we met and has post-thrombitic syndrome and currently his superficial veins are all clotted and he deals with massive swelling, etc all the time.
Good news is I did call my primary and went in to see her. She's a keeper for sure. She was so apologetic for how I was treated and confused since there's absolutely no red flags on me as a drug seeker or anything. She said we could try a different anti-inflammatory and Rxed Naproxen(Naprosyn). After 2 days on it, my hands are doing quite a bit better- until last night, but better again today. I"m still very thick-headed it seems. I swear my brain wiring has short-circuited to my mouth. It's driving me nuts. I go to say things and can't say it right, it's like the signals are all getting mixed up- I mispronounce things, say things out of order, start saying something and have to pause to collect my thoughts and remember what I was saying, or forget the names of things or words. It's so frustrating.
I am exhausted today because I didn't sleep well with the pain in my leg last night, but otherwise am feeling a bit better. Thanks for your concern.
06-18-2008, 04:57 PM
Oh man, DVT..possible pulmonary embolism, ooh...maybe you ought to see your doctor..ER...?
I have sciatic, from two failed back surgery though, FBS...I find if I lie flat on my back, arms straight out like a plus sign, cross. Legs together. Then take the sciatic leg, straight, not bent and stretch it over the other one, over the top of the thigh while slightly turning your hip and touching your toe on the floor. Hold breathe and feel the stretch. Now do the other leg...
If need, you can bend the leg at the knee and stretch it over that way...touching the knee then onto the flour.
Short circuiting..it is called the Fog...brain fart. I have that too, very common with IT and FMS. Keep track of the change and contact your doctor if it worsens...
For me, it is worse when I am tired, flairing without a French Bee Hive Coiffure or when too much artificial light or sun get let into my body...Usually I try to sleep it off or read mindless things like the Enquirer...
Enjoy the night...