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new symptom, plus dr problems
5 Replies
lorieholtz - November 9

for the past 2 days my left elbow is very inflammed looking...red to the look and sore. there is no swelling, but i'n not had this before. also my used to be pain dr has pretty much said get lost. i went to this place looking for injections, but i also knew the pain was getting to the point that meds would have to be involved as well. since my neck surgery over 5yrs ago i've been tried on all types of meds, such as nurotin, triplines, lyrica and so on, but all my life i've dealt with being very sensative to meds so yep they would have to stop them. in august he put me on cymbalta and that is where my life went so down hill. before all said and done with i was in the hospital cux of this stuff.he gave me samples of this med and it took me a month to get my nerve up to take this plus wanted to talk to him more about it. all side effects were things that i was already dealing with, but he assured me there would be no problem..needless to say i took it and look what happened. then one wk after getting out of the hospital and also since may they had me on percs 10mg take 2 every 4hrs. they put me on a pain patch called Fentanyl. well when he gave me a new rx for percs he dropped the dosage to 5mg and then this patch. when i dropped it off at the store the pharmaicist and i were talking and when she looked at what i had brought in and her exact words were "ur screwed" and i said what?? she said he should have never dropped ur mg of ther percs and then she acted like she didn't want to say to much more. well sure enough i come home and put the patch on and they each last for 72 hrs. well first 3 patches i could tell anything no help at all and then i was going thru withdrawls cux of percs mg dropage, so i just went ahead and took close to what i had been. now remember i was also going thru withdrawls from the cymbalta as well. thx god i have really good pharmacy that explained what was going on plus i called the pharmacutical co and they said the same. that was it take about 4 to 5 patches before it really is in ur system and u get results. but when i had seen him when i was on my 3rd patch and i explained i'm not getting help with these he really didn't comemt. well halloween nite i started to really notice the effect of the patch and omg by sunday morning my heartrate was 180-200 and i stripped that thing off my arm. according to the papers i should have been in the hospital under a 24hr watch but i so hate hospitals that i suffered here at home all last week and if was just plain hidious. my dr now doesn't want to c me anylonger and now talkin bout me going on suboxone. i try calling everywhere looking for someone that deals with fms and having no luck plus all these places i call say we don't give pain meds. u know i worked in med field for over 20 some yrs before all this happened and its getting so much worse to find ppl to help u. they make u feel like ur just an addict and what ur feeling just isn't there, but i've got enough diagnostic tests that show differently. i just don't know what to do anymore i really don't. in may when i started taking meds again it had been almost 2yrs, but then it got more than i could ever cope with... what to do????

 

Fantod - November 9

Hi Lori - Sorry to hear that you are in such a pickle with your pain meds and life in general. I think your elbow is probably tendonitis or something along that line. People with FMS seem to have a lot of problems with bursitis and tendonitis. I have bursitis in both hips and shoulders. I am more accurate than doppler radar weather reports....lol.

Your doctor's attitude leaves a lot to be desired. I would suspect that they are every bit as frustrated as you are with your medication issues. I just had bilateral surgery on my feet and I had quite a time getting my surgical team on board with my drug sensitivities and latex issues. I got tired of repeating myself.

I think you need a new pain specialist. I also think that you need someone to act as an advocate on your behalf. Perhaps your new counselor could be helpful in that way or could suggest another alternative. You need someone to give you support while you establish a relationship with some new doctors. It should be someone who can go with you and listen to everything that is discussed. This is a very stressful situation which means that you may not be able to take in everything that is said. That second person could help you remember and make sure that you stay on course.

You should go online to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly doctors in your area.

You should
also call your local hospital physician referral service and ask them for the top pain specialist on their roster. Make an appointment with a new rheumotologist and the pain specialist. Get copies of your records to take with you for each appointment to save time. Take someone with you to help you stay on track and absorb what is discussed.

My suspicion is that you are saturated with medication and your system has developed a tolerance for all of it. Someone needs to take charge and start over to figure out what will work
and the minimum dose needed to be effective.

You, on the otherhand, will have to agree to follow the instructions you are given to the letter. Tinkering around with medication is very dangerous and you may actually be adding to your problems. Any new medication can take 2 weeks or more to get established in your system. You will have to hang tough and work collaboratively with your new team.

I know that you are a tough person or you wouldn't be asking for help and admiting your problems on a public forum. Please do what I am asking you to try. Register with the National Fibromyalgia Association online and call your hospital for a new pain specialist. A fresh set of eyes may make all of the difference. We all hate the medical profession to one degree or another. I feel like a walking science experiment most days. However, for better or worse, there is a medical professional out there that will be able to help you.

By the way, please stop using Splenda. Any artifical sweetner including Splenda is not recommended for people with FMS. Go and buy some Sun Crystals or Truvia which are made with the Stevia plant. You'll find them in the grocery store.

Take care and let us know how you are doing.

 

lorieholtz - November 11

ty fantod,
i do take ppl with me to the drs office and have been doing so for quite sometime and just for the reasons u meantioned. when i'm in alot of pain my memory sucks lol. and with this tinkering with meds the only thing i really did was where he chged me from 10mg total (2 5mg every 4 hrs) i would maybe take 15mg. also he said every 4hrs and when ur only getting 2-3 hrs of sleep... well. i think its now just plain to me that he was not well acknowledged to fms at all. i've always been supercareful when it comes to meds. but i guess if taking 5 more mg of the percs and i also knew that for the past 6 month he had had me on 20mg is tinkering then yes i tinkered. when it came to the patch and cymbalta i followed that to the letter. i have made lots and lots of calls to find a specialist close to my area that has expertise with this condition. well i think i found one and i have an appt in Dec. we have very few rhumy drs in this area and the one an only i could find does not believe in this condition. i think when i referred to drs thinking were addicts is because of my personal experience while working in the medical practice. and now here i have it and i do know its such a real thing. yes just like u i've had severe hip issues which cuxed me not to be able to lay very long, so 2wks ago i got injections in both and what a difference it has made, but since bout yesterday i can feel it coming back. last nite i woke up with my elbow killing me and when i looked at it the skin was blood red and swollen. i took a frozen pkg and rested my elbow on it and it did help some. also this particular pain mgmt dr i was seeing was working with ppl that were or had some sort of spinal surgery. i've always been the type of person that takes a very active roll in my care and will express my feelings as to what is done cux no one knows my body better than myself. i've also heard where there are many many ppl that have tried all the fms meds and they too found themselves having numerous issues as well. this is why i've tried to get alternative types of trmt. i can say that i feel like as of yesterday i can finally say my withdrawls from all these foregin meds are now out of my system and i feel alot more like myself...ty lord!!! and now its raining so i'm sure u know what that means. i can always tell when its going to rain at least up to the day befoe it does... snow as well. i will be blessed the day i do find the right dr that can and will help me and i'm so looking forward to it. i'm also started to introduce some of the vitiamins that have been meantioned in here. this so reminds me of many many yrs ago when i was about 27 and my ribs kept breaking and i went to dr all over..no one could find the answer so they would say (well maybe its all in ur head) and my reaction would be how can that be when the ribs are broken lol, but after 3yrs of looking i finally found the right dr who did a bone biop and then i got the answer. i then was dx with a bone disease a type of osteopenia whch was very strange for a person of my age at that time. i will always be gratful to that man, but u know what he listened and i mean really listened and heard what was said. so i will never give up in finding the (right) physician cux i know they are out there. fantod do u have much problems with ur vision... i do alot, but thx goodness to this site i got answers, cux no one else would address that with me even though it was one of their ?? on their forms.
ty again for your help
lorie

 

Fantod - November 11

Hi Lori - Glad to hear from you, I was becoming concerned. Yes, sometime my vision is blurry even with my specs on. Just another FMS "perk." People with FMS seem to require more frequent changes in lenses etc. Unfortunately, the health insurance companies don't take this into consideration. I can only get a new pair od glasses every two years which is ridiculous. Nothing like trying to see with glasses that don't do the job anymore.

Sorry to hear that your hips are acting up again. When you see the new doc, ask about the Flector pain patch. This patch only works where it is applied and does not get into your bloodstream. You can cut them up to make them last longer. I sometimes cut one in half and slap them on my hips. They do help a lot.

Hang in there, things will get better. Take care.

 

ptalana - November 11

Hi Fantod,
I'm also struggling with glasses that are no longer strong enough. We also are only able to get new prescriptions every two years, yes you're right this is absolutely ridiculous!!!!! My vision is so bad it's like I'm looking through milky water. Also get alot more floaters, even without the migraine. My doc just attributes it to getting older, I'm 48 not 80!!!!
Hey Lori,
So sorry to hear your having such a difficult time. All the info Fantod has given you is spot on!!! So I will send you all good wishes and luck in finding the doctor you deserve.
Take care guys, Patty

 

lorieholtz - November 12

fantod and patty
its always good to hear from the 2 of u. i also wear glasses, but some days my vision with them is perfect, but then on other days its so blurry. you guys are going to crack up and then kick my butt lol lol, but its been yrs and i mean yrs since i've been to an eye dr or got new glasses. this is only cux of not having insurance. i did tell my other half that i was going to have to come up with the money somehow though cux i know how important it is to make sure that my eyes r healthy. lol 9 yrs lmao. but if this were all the time than i would say "yes" it due to the glasses. OOOHHHH ty for the name of that patch.. do they have a full body one lol lol. i wrote that name down so i could talk with my dr about it. i've really not been on here cux last wk and up towkend felt so yuck from those withdrawls from that patch they had me on. My hip is still not as bad as it was ... still getting some benefit from the shot. BTW i think i now know what u all mean by those chest pains/rib pain. had attack last nite and omg does that ever hurt. i've had these before...thx god very seldom, but had no idea that this could have anything to do with fms. to me i thought it was a gallbladder attack before, but i was cked bk then and gb was ok. i really think now that my fms goes wayyy bk when i was in my late 20's, but then u never heard much about it. umm does that mean i'm old lol. i've learned so much on this site that i can't even believe would be possible and it cux ppl like the 2 of u who take the time to answer ???. i also think u guys puts lots of time in researching and u just don't come up with any answers. i got last nite a bottle of glucososamine chondroitin 1500 mg. it says to take 3 at one time after a meal once a day.
ty so much again
lorie

 

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