SO frustrating.... | Arthritis Information

Whats wrong with me? Am I missing something when I see/speak with my Drs?? Do they just think because I don'e have severely swollen joints i'm not in a ton of pain?? My hands ARE swollen, they just don't look too bad because I'm a teeny person to begin with. Shoot, I probably look HEALTHY when my ankles, wrists and fingers are a bit swollen.

Taking 800mg of ibprofen twice a day ain't cuttin' it!!!!! *bangs forehead into laptop* My GP will keep me stockpiled in Ultram, but I have to take like 4 at a time to get ANY sort of relief, and even then it's minimal for the joint pain. (don't worry, I'm always careful to not exceed 8 in 24hrs!!)

This is really bad, but I've half a mind to look into one of the on-line Dr consultations and get meds that way. At least I won't feel like I'm some junkie trying to get a fix (thats how these assistants make me feel!!!)

Ugh. And I'm dizzy dizzy dizzy today when I stand up. Am stuck on the couch since DH HAD to go into the office this morning. I'm scared beyond belief to step into my kitchen for fear of passing out on the tile again. e

I'm sorry, I don't mean to vent. I know many on here have it much worse than I do. My poor DH is just sick of hearing it (he's at the point he's thinking about calling and telling someone off....especially after having to deal with me unable to really get out of bed or off the couch all weekend because of the pain I was in), and my RL friends just seem to pity me, and I can't take much more pity and "poor you" from them!! (i know they mean well, I just can only hear it so much, KWIM??)

THanks for being here. Just letting me vent, I appreciate it. Y'all have NO idea.

Now to call the Rheumy's office AGAIN. This will be the 5th time since last Thursday. Ugh. (I'm wondering if the assistant isn't relaying all the information I'm giving her????)

*sigh*

Oh, do y'all think I should get a blood sugar monitor thingie??? I'm seriously tempted...I'm so scared of it happening again. (I nearly went down a couple times over the weekend because I got really dizzy...even after just eating!)

yes get a blood sugar monitor, if for no other reason than to reassure your self.

Dr's are OBLIGATED to treat pain. Tell the office manager you speak to that you may go to the ER and ask to be treated for pain, and that you will let them know your RD is ignoring your issues. If all else fails go to your GP and ask for vicodin, and a referral to another RD.

I am on remicade and still take 4 -6 Ultram a day, and it just takes the edge off. there are still days when I need vicodin. Each person's perception of pain is different, you need to make your dr understand that your pain is real.

So sorry that everything is frustrating right now. We are here for you to vent to!

Have you called your GP and explained that you have to take all that ultram to get relief? That can't be a good thing to take all that.

Maybe if these assistants at your rheumy's office are making you feel like you are a junkie because you just want to control your pain maybe you should look into getting a new rheumy. It doesn't matter what your hands and feet look like. Pain is pain and uncontrolled pain is one of the most frustrating things in the world to me.

Please be careful if you do one of those on-line doc thingies. Maybe research anything that they tell you.

Maybe if you do monitor your own blood sugar you can go into the doc office and say see....my blood sugar is whacked and we need to do something about it. And if it isn't whacked, then at least something has been ruled out.

Low blood pressure will cause you to be dizzy when you stand up from a sitting or laying position. If you are laying down and want to stand up, go from laying down to sitting to standing very slowly. Once you stand up, stay in place for a few seconds before walking around. All that ultram may possibly be contributing to the dizziness too.

Chronic pain sucks and you have the right to control your pain and get some answers from your doctors and not just the run around.

Let us know what your docs say.

Gramma....well, I don't know, I may be ultra paranoid about asking for pain meds to begin with. I know, I need to get over it already.

My blood preassure was actually sky high when we were at the ER. But it's normally pretty low, I can tell when it's getting too low though, I get really sleepy.

DH's picking me up a monitor for my blood sugar on his way home...he's so freaked out this could happen again, and he won't be home.

I don't take Ultram during the day usually, just at night, so I can fall asleep, because it does make me a little dizzy. I realy don't like it that much....I prefer vicodin, seems to help with the pain more, and doesn't make me dizzy or anything wierd.

Still waiting for a call back from the RD.....I put a call in at 9:15am....it's 1pm already! Hurry up!!!! *taps foot in anger*

I'll keep y'all posted......
Just peachy....RD is out of town until Thursday. ALL the Drs in his practice are gone, some convention. *deep sigh* Stupid assistant was like "can't you just take the muscle relaxers during the day?". Um, HELLO. 1. They knock me out...I have two small kiddos to take care of., and 2. they don't help with the pain to begin with. Whats the point? I can't be that knocked out at night, the baby still gets up 2-3 times a night, and he won't deal with anyone but me at night. (DH tries....but the baby just screams and won't eat until I'm there...lilttle stinker!!)

So, I put a call in to my PCP. *crosses fingers* I needed to call them about the MRI results anyways. I just said the Ultram doesn't really help the pain I'm in from my joints, and my RD Is out of town, and his office said to call my PCP in the meantime.

Gah, this stinks. Totally stinks. To top it off, I've been really dizzy and nauseaous all morning, ick!   (trying to stay seated....I don't want to pass out somewhere!!)
Does eating something sweet help with the dizziness? You definitely need to get all of this figured out. I'm so glad the MRI turned out fine, but don't stop there. Push for answers and push for help. You need someone to see you and to hear what you are experiencing. Go to the ER again if you need to, so you can get some help. Midge, Don't ever apologize for venting here. I could not, I MEAN COULD NOT, cope without my pain meds. You have to be assertive. Is there a walk in clinic you can go to? They have always treated me well and been easy to get pain meds. The problem is, everyone knew me.   I had been in the paper a few times and there are only three rangers. I am wondering if that is going to be different in a new town. I pray not. BE ASSERTIVE. I am and it makes you feel good to take some control. Good luck, we do feel your pain. Midge....stopit with the pain killer paranoia! (Painfully shakes finger at you!)

Here a couple of ideas for you if you think your blood sugar is low. Eat a nutty buddy bar. The chocolate will immediately raise your blood sugar and the peanut butter will keep it raised for a short period of time. Or drink a glass of orange juice. If you are super low drink a glass of OJ with a teaspoon of sugar (yes I know very sweet but will raise it immediately) and get your butt to the ER! Please tell hubby nothing by mouth if you are semi coherent. You can also get glucose pills at the drugstore that melt on your tongue. Paramedics use those too.

I hope those docs call you back quickly. Let us know what your blood sugar is after you test it. You are on my mind today and I hope you can feel better and figure out what is up quickly.

[QUOTE=roxy]Midge, Don't ever apologize for venting here. I could not, I MEAN COULD NOT, cope without my pain meds. You have to be assertive. Is there a walk in clinic you can go to? They have always treated me well and been easy to get pain meds. The problem is, everyone knew me. I had been in the paper a few times and there are only three rangers. I am wondering if that is going to be different in a new town. I pray not. BE ASSERTIVE. I am and it makes you feel good to take some control. Good luck, we do feel your pain.
Awww, thanks Roxy. *hugs*

If my GP won't call me in anything, I fully intend to have DH take me to the ER. This is just BAD. It's really cold here today too, and I don't think that is helping with my joint pain. Plus I'm on a lower dose of prednisone...I am really noticing the difference between 10mg and 7.5mg, WOZERS. I'm gonna die when I go down to 5mg Wens!!!

My biggest problem is getting over the fear of ASKING for pain relief. I think years as a competitive althlete who often competed in severe pain is still in my mindset. Couldn't ever take anything other than tylenol or ibprofen....because of random drug testing, and even if you HAD a script for painkiller, I.E. Vicodin, if your number was pulled, you were SCREWED for the season. One gal was forced to be out for a season because of a cold medicine she took (IIRC, it was cough syrup with hydrocodone in it....pretty basic when you have a wicked cough/cold) So yeah, I just need to get past that. Slap me now!

*sits on couch willing phone to ring* They need to hurry up! DH's gonna leave the office soon, and I'm hoping it's something he can pick up on his way home. heh
[QUOTE=grammaskittles]

Midge....stopit with the pain killer paranoia! (Painfully shakes finger at you!) LOL. You deserve to control your pain! You deserve to function as well as you can! Demand that respect from your docs! Please!

[/QUOTE]

*hold stomach in pain from laughing*

Gramma....you CRACK me up.......I needed a laugh this afternoon too!!!

Still waiting on PCP to call back. If I don't hear by 4pm, I'm calling them again. I WILL DEMAND PAIN RELIEF!!! Because I know someone somewhere is waiting to beat me with a stick if I don't!!! (in line behind my husband!!!

Don't wait, call them again. If they are not willing to treat you, then they should be sending you to Urgent Care or the ER. Your blood sugar is really worrying me.

Also, is there any chance you could be pregnant?

If you faint again, call 911 immediately. If your blood pressure and your blood sugar are both going wacko then it needs immediate attention. [QUOTE=Deanna]

Don't wait, call them again. If they are not willing to treat you, then they should be sending you to Urgent Care or the ER. Your blood sugar is really worrying me.

Also, is there any chance you could be pregnant?

[/QUOTE]

Hmmm, don't think I'm pregnant. They did ask me when I was in the ER last week, but I told them I didn't think so. It's not out of the realm of possibilities, but I am assuming (which I probably should NOT do here) that they tested me in the ER....I know several friend of mine have found out they were pregnant when they passed out.

Now, I don't know if my blood sugar IS that low, I seem to be okay. I just get really dizzy when I get up, so I have to be very careful....DH moved the furniture around so if I were to pass out in the living room, at least I wouldn't hit anything, other than possibly a couch. We also have a "check in" thing...he either text messages me on my phone, or IMs me, and if I don't reply within 5min, he's calling a neighbor who has a key to our house.

My GP did finally call me back, right after I hit "post reply" to be exact. Well, his nurse called me back. He had gone home because of a family emergency earlier in the day, but she called him and he wants to see me anyway to go over everything that happend last weekend. (when I saw him Tuesday last week, he didn't have my medical records from my hospital stay yet) Plus he has the resuilts of my MRI. *bites fingernails in terror*

So, I can wait until tomorrow, I loaded up on some advil, sent the kids to my neighbor's house until DH gets home (which by that time it'll be bedtime), and am going to run a hot bath. Floating in searing hot water always helps some. I'll probably pop a few benedryl and go to bed (benedryl is actually for two things....helping dry my milk up (it's been coming back in the last 24hrs!!! eeks!) and helping me sleep)

So yeah. Hopefully tomorrow will be a better day. Wens is gonna stink, when I drop down to only 5mg of prednisone. Oy, so dreading that day. I'm glad thats the day DH works from the house. WHew

Okay...first, dont feel bad if the ultram isnt cutting it....its kind of at the bottom of the barrel when it comes to RX pain meds...and it doesnt work for alot of people. You need something better!!!

I hear ya on the swelling thing...actually quite a few RA patients rarely have visible swelling...and I know that when mine do swell it is not as obvious to anyone else. I may have put on the pounds but from the knees down and the elbows down I am still boney. I can tell when my socks squeeze my feet and my rings dont fit though.

About the BS (blood sugar silly!) be careful to not eat alot of simple sugars. Breads, pastas, sweets and sugary things, fruit juices and fruit are all simple sugars. They may help you BS come up quick, but they also set you up to crash. If you feel that your sugar is very low you can drink a small glass of Oj or grape juice, but you should back it up with some cheese or milk and a slice of lunch meat. If you are trying to maintain you sugar level, eliminate the simple sugars....or occaisionally you can allow a serving..of fruit for example, but pair it with low fat dairy, veggies and lean meat. Keep in mind that banana have more sugar than most other fruits and beets and carrots have more sugar that most other veggies.

Finally dear....the hot hot baths....you can actually trigger what is called a vasovagel response...it is basically the heat causeing your blood vessels to go crazy and you can get dizzy and even pass out very easily.

Sorry to be the mommy here...but I just want to keep you safe. By the way...when you are home alone..please carry a phone in your pocket when you are walking around the house if you are still having the dizzy spells...just in case you do fall and cant get up.

Take Care!!!!!

Crunchy, will you be my mommy?LOL deanna! Crunchy you know so much STUFF. It rocks. I wanna ask you 80 questions now...LOL Wozers Crunchy.....can I adopt you as my mommy too? My real mother is so nasty, I refuse to speak to her anymore (don't need/want the stress..long story). So yeah, I need a mommy!!!
Well, I didn't take a hot bath last night (you will be proud!) because I didn't feel like waiting for the stupid tub to fill up. Somewhere in the back of my mind I didn't think that a hot bath when I'm home alone was probably a good idea ANYWAYS.

I did have my GP check my blood preassure, as you suggested, and it seemed okay. It was about the same both times. (don't ask me the numbers, I can't remember for the life of me....I'm still having a heck of a time with some short-term memory loss. Doc asked me to remember some words.....I remember them NOW, but when he asked me about them, I forgot he even told me to remember words. WTF?! Ugh) He didn't think I fainted because of my blood sugar though. *shrugs* So, I don't know. I'm definatly going to ask the RD when I see him on Dec 5th. (my list is getting SO long)

GP gave me a script for Arthrotec? (I think I spelled that correctly??) to take WITH my Ultram. However, the pharmacy called, and it's a "non-formulary", which means for 30 pills (and the dosing is 4 times a day!! He wrote the script for 90 pills.). So yeah. Forget that. They were going to call his office back, but i have to go back in tomorrow anyway, so If I'm dying still, I'll talk to him about it. I don't know, at this point I'm almost okay with waiting until Thursday. I'm feeling halfway decent today *knocks on wood*. If I know there is a light at the end of the tunnel, I can handle some pain.

Oh yeah, as to why I have to go back tomorrow. *warning* DO NOT READ IF YOU GET GROSSED OUT EASILY!!!!!

This is really disgusting. I guess in my weaning....I still had milk last week, and so I pumped I believe Friday night to just relieve some preassure (it was agony!!). Well, I'm already VERY prone to mastitis and infections, and clogged ducts. I had one in my friggin' ARMPIT. HELLO?! How ubsurd is that?? Okay, so it's funny too. (I have to laugh....this is the second time since I've been on prednisone I've had an infection have to be drained, last month it was my finger...this is way grosser though). Ewwwwwwwwwwwwwwwwwww. So he had to cut it open, and well, yeah. Ick. I have to go back tomorrow to make sure it's not still filling with milk or anything.

I swear, my body has completely betrayed me this year. Or perhaps it's just getting back at me for the 10 years of torture I put it through when I was skating. *sighs*

Oh yeah...here's the kicker. I'm afraid to DH this, for fear he may go off. I'm probably going to find a NEW PCP. BECAUSE this one said to me when he came in "Okay, I have to ask, and please don't be offended, but I don't want to miss anything, Do you feel Safe?" I was like, "What? You mean, like at home???". He said that alot of times when people have alot of health problems, or go to the doctor alot (okay, so I'll admit, I've been a TON in the last 5 months, but sheesh, I can't help it when I get sick or joints hurt, or whatever!!!) they are really crying out for help from abuse at home. WTF?!

I know I know, it's probably his job to make sure....and I did have a killer bruise on my shin and another on my arm (oops!!) that the nurse asked about. But I'm a major klutz, and I bruise easy normally, don't get me started on what I look like since I've started on prednisone. Oy. I ram my hipbone into the corner of a wall, and I end up with a HUGE shiner for at least a week. Guess I shoulda worn pants and a long sleeve shirt today. heh.

*sigh* Anyway, another day another Dr. Thats going to be my new motto. lol

Oh, and DH was like "why don't we just get pregnant again, then the joint pain will go away".
(sorry this was so long....I've been typing it on and off all afternoon....)

Glad to hear your blood pressure was fine. Did he say anything to you about your MRI results? Are they going to do anymore tests to figure out why you are dizzy and passed out?

I know you kind of felt like WTF when your doc asked you if you were safe at home. But maybe look at it this way. At least he cares enough to ask that.

I hear ya about your body betraying you this year. My doc is a super nice guy but I'm so tired of seeing him. I was hard on my body too when I was younger. Sports and doing other crazy stuff. I guess I am paying the price now.

I hope you get answers to everything soon!

Oh Ms Midge sorry everything is out of whack. I'm really glad your doc asked if you were being abused - he obviously cares.

Isn't it odd for someone who was so athletic, to be clumsy? Unless of course they are dizzy - you know those spinning walls just slam right into you - they have no control at all.

Arthotec is just another nsaid. Do you know one of the major common adverse reactions to nsaids is dizziness? It has been more than 25 years since it happened to me - I had been taking tolectin for more than a year. it had worked so well that I was able to cut the dose back. Then I started getting dizzy - it got worse and worse. Finally went to see my GP thought it might be a kidney infection - nope GP got it right off the bat - it was the tolectin! Said to stop taking it - take tylenol instead and call rhuemy, gave me a script for pills used with memineers (sp?) disease. It cleared up within 24 hours and was gone in a week.

Just a random thought.

Okay ladies.....maybe I don't need a new GP. I was just taken completely by suprise when he asked me that. I was thinking "OMG, did my MOTHER find out you are my doctor and call you and try to tell you my husband beats me???" (Okay, no he doesn't, OMG he never would, and I think his mother would SHOOT him if she ever got wind of ANYTHING like that. But my mother spread around nasty rumours right after I had my first baby telling people that DH beat me AND the baby. I got wind of it from a friend of mine who heard it from my mother's best friend's daughter...whom she (my friend) worked with. I know, sounds nuts) But maybe if it's a sign that he cares, it's good.

You know what.....I wonder if it was the Relafen my RD had put me on the Friday before I passed out that did it? Because I'll admit, I was in so much agony Sunday night that I took one, stomach pains be damned (regretted that one). I was really dizzy all evening as well as yesterday. Hmmmmm. I've never been a huge fan of Advil to begin with, I can't remember why, but Tylenol was always my OTC of choice when I had both on hand.

OMG, tell me about it! THe clumsiness. It's really true. I used to train with many of the skaters that have been "on top" in the past 3-4 years, and the really beautiful ones on the ice (I.E. Sasha Cohen), are really clumsy off-ice. I can skate, I can dance on pointe, but gosh darn it, I cannot walk in a straigh line and avoid that wall in front of me to save my life! I had more injuries OFF the ice than on.
Ohhh, yes, MRI was perfectly normal. I think I flunked the memory test though. I remember something about a table and a dog, and that they were important, but I can't remember what. Dangit. I'll have to ask him in the morning.

Hey, since i'm going back tomorrow morning, I didn't call them when I found out my co-pay was going to be so high. I think I"m just gonna tell him they won't cover it under our drug plan, since they have their "preffered" ones (which they do....my drug coverage is WACKED sometimes, I don't get it). Any suggestions on what I should ask for? Or just refill my ultram and suck it up until Thursday when the RD is back in the office.

I need to write down too that I've been dizzy with the relafen. I'll just say my GP mentioned that it could be the NSAIDs causing the dizziness (which is fine, my stomach will thank me for the little white lie, as will I'm sure my pocketbook, as they try to run through 15 gazillion different ones to give me), and maybe we can skip useless meds. WHats with them thinking Ibprofen can work on this kind of pain? Are they stupid?

Ugh, I have to go to bed. My hands are SCREAMING at me. I just wanted to post before I went to bed, because I know y'alla re so wonderful, and I'll wake up to ideas for meds.

*hugs to all*

I want to send everyone on here huge bunches of beautiful flowers. Because you are all so great! :)

No, do not suck it up and just ask for more Ultram. Crunchy is right when she said it is at the bottom of the barrel when it comes to pain meds. My doc didn't even consider it. You remind me of a little kid that we have to tell to pick up their clothes a zillion times LOL! ASK FOR PAIN MEDS THAT WORK! YOU HAVE THAT RIGHT! We are going to call the doc for you...Midgie is afraid to ask for pain meds that work could you please give her some?? LOL!

I am glad the MRI results were normal. What a relief. I wonder if it was an allergic reaction to the relafen that made you dizzy. Hubby can not take prilosec because the same thing happens to him.

I am the biggest klutz. I trip over my own 2 feet. But I could play softball and football and rollerblade like there was no tomorrow lol. No basketball tho. Broke my nose twice runnning into the pole screaming PASS IT PASS IT!

Thanks for the flowers. I sure needed them.