Frustrate with docs n pharmacies

Have any of you felt totally alone and like no one wants to help you? My last appointment with my doc was a total letdown. He looked at my very long and detailed list of meds/treatments I’ve tried over last 3 years and said he’s sorry to say that he probably can’t help me. Well where in the hell does that leave me? I guess I will just live/suffer through daily pain/hell for the rest of my life. And everyone wonders why I fall into depression. Hmmm, let’s see.

Yes, I have felt really alone. The doctors and pharmacies can be a real pain!!

I have been “fired” by a doctor for being too “complicated” right when I needed medical attention the most. I was in the hospital, on disability and the doctor didn’t want to be bothered with filling out a one page form.

Don’t give up, keep fighting for proper diagnosis and treatment. We are here to help and support you every step of the way! Feel free to vent, get it all out.

Many hugs,

PS ping me any time

Mmmm shanscelica

The health care system for the most part just doesn’t get it, although there has been some improvement over the last few years. I am a nurse and even I got treated badly, but I just became as informed as I could, this group really helps,and started to take charge of my own health care, and so far that has worked for me. I have come across some incredibly bad treatment, but I’ve just not gone back to any doctor who doesn’t treat me right, and there have been a few who have treated me badly. If you start to feel depressed their are some very good self help programs on the net. Take Care Barb

Hello shanscelica,

When you say doc to you men your gp or specialist?...because if it's your GP who's been treating you i'd look for a rheumo.

I've been in the situation you have with my manic depression over the years they put me on antidepressents galore and none was working and in the end they stated we can't help you no when it hits me i have to struggle through till if over rides me.

When i first found out about my Lupus besides everything else, oh the rheumo loved diagnosing me but would he help me no was like drawing blood to get on the plaquenil and when i saw him i was forever having words with my dermo was concerned about this with my SLE and he over rode the rheumo sent me to another and he's a brilliant bloke and soon heling me.

It annoys me when there's so many who need help including yourself and they throw the towel in they should'nt be in the profession unless they want to help and try hard with patients.

((A large hug your way)) & stay strong :) Terri

Tea 20
Couldn’t agree more about doctors who throw the towel in, particularly when they have diagnosed you, it’s nothing but an insult and they don’t even know it.

My GP just treated me as I think many do here in OZ, as if I don’t have fibromyalgia. They give emphasis on what they know, my diabetes.

The first rheumy I went to as much as said it’s all in your head! Gosh I was furious. It took me about a year to get over it.

Anyway enough about me, When you say that you have tried everything for manic depression, as a retired mental health nurse I have to ask you if you’ve tried Lithoum, I’m sure you have but I just had to ask. I’m very sorry that nothing has worked for you, you must have to put up with an awful lot.
I don’t know if I should say this or not but plaquenil I took it for a month until I found out that it can cause blindness, and then I stopped saying to my doctor, I couldn’t cope if anything happens to my vision. I hope you didn’t mind me mentioning that.But I have to say that it did fix my loint pain.

Hope this is OK. TAKE care.

God yes! Seven years of bs from docs and specialists. After last appt at the hospital I’m scheduling a throat squeeze for the pain mgmt consiltant lol. Not funny though. Very frustrating and depressing isn’t it. I’m still battling on and you should too. It’s so hard but we have and will continue to be smtrong, in mind if not in body. It’s us against the world!

Hello Barb,

I think it's disgusting how a large majority of doctor's treat todays world there's a majortiy who do care about patients but they're very fare and in between and it's keeping fingers crossed you drop on that person with your first visit.

Barb we've had some upset members on LWL where the doctors have told them they're paranoid besides all in their heads and they've been really upset like yourself...for christ sake we all know our own bodies.

My first reumo got dressed down by me the last time i saw him, as he was speaking to me like i did'nt know what i was on about well after 28yrs nearly of different ailments which the Lupus caused i gave it him back and he sent a letter to my GP....saying it was'nt right how i spoke to him in medical terms, what because i know what i'm on about.

Now the new rheumo saw me looked at my bloods all kept saying positive and some outlined in pink when i was in a flare and he told me the sjogren's is realy ruling my body, he upped my plaquenil to 400mg daily and i see him the 30th of this month as he's asked me if i want to trial Rituxan Iinfusions what they're doing now for sjogrens plus he x-rayed me feet and hands...brilliant bloke from the start.

Barb i've not been on Lithium they refused me those because of my other meds...what happens with me when i've been on them is i'll start off on a certain dosage and i go great but within a week back down and they've took me to the higest dosage and they've all been the same...i take valium now besides frisium, i'm only allowed 5mg of valium daily and the frisium 20mg at night but those are for my nerves and two frms of epilepsy....i've been in psychiatric hospital's in the past because of one my seizures being wrongly diagnosed for schizophrenia...SORRY FOR GOING ON.

Plaquenil helps my skin and leg spasms but regarding my eyes which i don't mind you speaking eyesight is bad short and long distance, my glasses are tinted as the muscles are damaged, i have slanted vision, colour blindness and now they're totally dryed out with the sjogren's and al my tearducts....there's that much going on it's a wonder my marbles are with it. LOL

Love Terri :)

P.S Thanks for listening to me.

Wow I am so impressed with what you are tolerating and generally coping with. I admire your strength.

I am so unimpressed with doctors and their complete ignorance about our conditions. I hope that you keep up your strength and stay strong. I admire you capability. Take Care Barb

No, no no, don't give up yet! Time to find yourself another doctor, one who has experience treating fibro. You can even call his office and ask them if he's up on treating fibro. There ARE good doctors out there, it's just time consuming to find them. You will find one who will work with you if you continue to look. Your current doc. apparently doesn't know how to treat fibro. Or is intimidated by your list of meds and doesn't know where to go from there.

What about a rheumatologist? Have you gone to one yet? He can run tests on you to rule out other illnesses with the same symptoms as fibro. Or perhaps rule them in. Quite a few fibro people have other auto-immune illnesses at the same time.

And have you gone to a pain management clinic? They can use alternate methods of treatment like steroid injections (never helped me) or cauterization if appropriate. Or other pain med recommendations.

Yeah, I do understand your frustration with doctors. Some of them seem to willfully NOT want to learn anything about our illness and just pass us along, like a failing student who is passed up into the next grade in order to get rid of them. So you need to find a proactive doctor who likes the challenge of treating you. They are out there. Don't give up!

Thanks Barb,

Over the years and since finding i have A1 Disease overlapping autoiimune waking up to a loving hubby and knowing there ismore people out there worse off than myself and some don't even know what day it is.

Al my love Terri xxx

Hi Jo,

I totally agree with Petunia you need to carry on fighting and keep searching till you get a good rheumo...i was like yourself (SK) can tell you and it was'nt till my Dermo was disgusted in my rheumo's behaviour that he took the whole situation into his own hands.

Keep fighting Jo. :)

Well, I’ve been to every type of doc there is I think. This doc who apparently cannot help me has fibro listed as one of the things he treats yet he has no idea how to treat it. Id say false advertising for sure. He is a pain doc at his own pain clinic. He also insists on giving me hydrocodone which does nothing for me. Its as if I took nothing at all. Doesn’t even touch my migraines in the least. I’ve explained this a million times n he refuses to listen to me. Says nothing stronger will help. Hmm. What? Sure. Nothing stronger will help my migraines? Then why have I been given meds before that were stronger and did work? And don’t get me started on his stupid office staff. They have screwed up every prescription I’ve ever gotten. When questioned, they argue with me. Mind you they answer phones and know nothing about medicine. Thank god I’m a registered nurse and have some clue of what’s going on or else who knows what id be taking. Unreal. I feel sorry for all his patients. And then add the stupid pharmacy staff in the mix and its a freakin nightmare. I have an appt with a different pain management guy on tues n I pray that it is a better experience.

Hi Shanscelica,

The man sounds abit of a joke with what you've explained besides staff besides and what would'nt go down to well either is you being a registered nurse they hate the challenge and feel underminded but good for you otherwise on seeing someone else and i hope he's able to treat you in a better manner and whatever he gives you, also gives you some relief.

Hugs Terri :)

I agree that it is time to find another Dr, they are out there, just takes you years to get to them sometimes! I know first hand!

You know, that's disappointing that a doctor would even treat a colleague like this. It's the godhood complex. I truly figure that someone that inflexible isn't the right one for me and would be too full of himself and inflexible to deal with my very real illness. So onto the next one!

I like your approach Barb about not going back to the ones who've treated you badly as well as taking charge of your own health care in terms of being armed with info and choosing to stay with only the docs who treat you respectfully.

Same here Susan as you know it took me long enough just the's the luck of the draw as we call it.:)

The current time for a diagnosis for Psoriatic Arthritis is currently 7 years, before that it was 30 years, and with the Enbrel commercials featuring golfer Phil Michelson, we are making further strides. My Rheumy says that Phil has done a lot for us! He referred to him as 'the golfer'! ha! Nice to think that we can know something that these geniuses cannot or do not! So glad I have him though!

No one famous has admitted to having Fibromyalgia, so we are still waiting for the poster child for Fibro!

Well at least Phil's helping in a large way. X

Oh, he is, but because he is a pharmaceutical spokesman, he always has to appear to be totally healthy and happy! Tough call, but surely the extra cash helps!

Well at least he's showing good face Susan even if it's for extra cash. LOL

Lets just hope he is healthy then besides because it's one tough call for extra cash:)