For those with physical condition do you trust your drs?

[Klo]

I've had RA since I was 7 but I was in remission for about 13 years starting in my 30s. After covid it has started up again and I have been seeing drs since the beginning of this year but I feel like they have no urgency to get me a diagnosis or effective treatment. Since I didn't have insurance most of my adult life and I don't have access to my medical records from when I was a minor, it is like starting from scratch.

When I spend all day every day in pain and also some sleepless nights, it is hard to think of anything except dying.

I haven't felt dismissed when I am seeing the drs, but I am wondering if they really understand the situation. They have identified a major spinal issue but that doesn't explain the widespread pain I'm feeling which seems to be worse after the last round of medication I took. I just wonder if i am getting the correct care or if maybe I'm not communicating clearly with them.

It's hard to tell where the pain ends and depression begins. Just wondering if anyone else is going through something similar.

 

[NotSureToEndure]

Yep same boat.

I feel dismissed and don't know how to ask for help anymore. I've had extensive checks and scans. All clear. I'm in pain, but I'm green light 'healthy'. I had a doctor tell me he could tell by the way I walked into the room I'm fine physically.
I do believe the sensations in my body could be mental, but they feel fucking real. I guess they are real, but perhaps they are false signals.

I feel like I'm wasting the doctors time when i speak to them.

Finally caved and I'm trying out amitriptyline at a low dose to see if it really helps. I don't believe it will but I want to try for a month or so.

No idea what I try next. I genuinely feel at a stalemate.

 

[Klo]

Yep same boat.

I feel dismissed and don't know how to ask for help anymore. I've had extensive checks and scans. All clear. I'm in pain, but I'm green light 'healthy'. I had a doctor tell me he could tell by the way I walked into the room I'm fine physically.
I do believe the sensations in my body could be mental, but they feel fucking real. I guess they are real, but perhaps they are false signals.

I feel like I'm wasting the doctors time when i speak to them.

Finally caved and I'm trying out amitriptyline at a low dose to see if it really helps. I don't believe it will but I want to try for a month or so.

No idea what I try next. I genuinely feel at a stalemate.

It really is baffling and I am just not sure what we are supposed to do in this situation. Hope the new med helps

 

[NotSureToEndure]

It really is baffling and I am just not sure what we are supposed to do in this situation. Hope the new med helps

Thanks yeah, i hope you can find relief somehow too.

I have had feelings of resentment towards the healthcare system in past, from my experience which hasn't been great on the whole. But now I just feel sort of indifferent.

To be fair I understand how hard it must be to diagnose someone when there are no clear signs of anything.

Sometimes stuff just is as stuff is... I believe our mental state has a profound effect on our physical. But equally I have no idea how to think myself healthy either

 

[Cathy Ames]

I've had RA since I was 7 but I was in remission for about 13 years starting in my 30s. After covid it has started up again and I have been seeing drs since the beginning of this year but I feel like they have no urgency to get me a diagnosis or effective treatment. Since I didn't have insurance most of my adult life and I don't have access to my medical records from when I was a minor, it is like starting from scratch.

When I spend all day every day in pain and also some sleepless nights, it is hard to think of anything except dying.

I haven't felt dismissed when I am seeing the drs, but I am wondering if they really understand the situation. They have identified a major spinal issue but that doesn't explain the widespread pain I'm feeling which seems to be worse after the last round of medication I took. I just wonder if i am getting the correct care or if maybe I'm not communicating clearly with them.

It's hard to tell where the pain ends and depression begins. Just wondering if anyone else is going through something similar.

Are you still being treated for RA or only the spinal thing?

To answer the question, NO. I do not trust my doctors (or the doctors I have had in the past, I should say). All doctors are not created equal, and some of mine have not been very good.

 

[Klo]

Are you still being treated for RA or only the spinal thing?

To answer the question, NO. I do not trust my doctors (or the doctors I have had in the past, I should say). All doctors are not created equal, and some of mine have not been very good.

They have only given me NSAIDs and painkillers so they are not really treating either aggressively yet. I am inexperienced in getting medical care and it is already a hassle to go to appointments when I'm in so much pain. I can't imagine trying to find new drs at the moment.

 

[EvaKay]

Fuck no.
I've been on the site for less than a day and it's really harrowing to see so many chronically ill people here, myself included. Can't help but feel like we have been failed by doctors. It makes me very sad.

 

[Klo]

Fuck no.
I've been on the site for less than a day and it's really harrowing to see so many chronically ill people here, myself included. Can't help but feel like we have been failed by doctors. It makes me very sad.

Very true. For me there is a direct relationship between extended time spent in pain and suicidal thoughts. I feel like drs don't really care. I don't even mention suicide to my dr because I need her to treat pain.

 

[Cathy Ames]

They have only given me NSAIDs and painkillers so they are not really treating either aggressively yet. I am inexperienced in getting medical care and it is already a hassle to go to appointments when I'm in so much pain. I can't imagine trying to find new drs at the moment.

Yeah, what a pain! I find getting medical care is exhausting and demoralizing.

So, I think what I would try to do is make sure they know about your prior RA diagnosis. Ask them what tests would need to be done (or redone) to rule it out or give you an official diagnosis. If you get that RA diagnosis, ask for a referral to a rheumatologist. THAT person would hopefully be better able to assess your medical issues. Or check your insurance and see if you are able to "self-refer," in which case I would try to do that (while also recognizing that the rheumatologist still might not see you without a referral).

That's just off the top of my head. But possibly I'm not understanding everything.

 

[Klo]

Yeah, what a pain! I find getting medical care is exhausting and demoralizing.

So, I think what I would try to do is make sure they know about your prior RA diagnosis. Ask them what tests would need to be done (or redone) to rule it out or give you an official diagnosis. If you get that RA diagnosis, ask for a referral to a rheumatologist. THAT person would hopefully be better able to assess your medical issues. Or check your insurance and see if you are able to "self-refer," in which case I would try to do that (while also recognizing that the rheumatologist still might not see you without a referral).

That's just off the top of my head. But possibly I'm not understanding everything.

Yes I've seen the rheumatologist once but my next appointment is 2 months after the first. He seemed to dismiss RA based on blood tests but that is not the only marker. Them he gave me flexeril which does nothing for bone and joint pain. I'm just feeling like this is a lot work to advocate for myself when I'm not in the greatest shape. Very frustrating

 

[Cathy Ames]

Yes I've seen the rheumatologist once but my next appointment is 2 months after the first. He seemed to dismiss RA based on blood tests but that is not the only marker. Them he gave me flexeril which does nothing for bone and joint pain. I'm just feeling like this is a lot work to advocate for myself when I'm not in the greatest shape. Very frustrating

Yes. It is very frustrating to have to advocate for yourself when you feel horrible. Sometimes it is impossible. It can be helpful to bring someone along, but not everyone has something to bring along. [Or that person might end up being unhelpful.] I sure hope you can get some answers and some better treatment!!!!!!

 

[Niko66]

I absolutely do not. They have been quite literally useless at helping me.

 

[toxictunes]

I've had RA since I was 7 but I was in remission for about 13 years starting in my 30s. After covid it has started up again and I have been seeing drs since the beginning of this year but I feel like they have no urgency to get me a diagnosis or effective treatment. Since I didn't have insurance most of my adult life and I don't have access to my medical records from when I was a minor, it is like starting from scratch.

When I spend all day every day in pain and also some sleepless nights, it is hard to think of anything except dying.

I haven't felt dismissed when I am seeing the drs, but I am wondering if they really understand the situation. They have identified a major spinal issue but that doesn't explain the widespread pain I'm feeling which seems to be worse after the last round of medication I took. I just wonder if i am getting the correct care or if maybe I'm not communicating clearly with them.

It's hard to tell where the pain ends and depression begins. Just wondering if anyone else is going through something similar.

im so sorry for you my english is a bit bad but ill try to explain my opinion

doctors are just humans, most of them are always very busy. Sadly most of them dont have enough time during the day to even think about a solution for each patient in pain, but often they simply just dont know how to help and than they just want to move on to the next patient, to not waste time..It took me 4 years to find a doctor to help me with a "simple" problem..(atleast its more simple than RA) it was sadly to late so im suffering in chronic pain in my whole head since 6 years…anyways If i would have listen to the first 5 doctors i met, i wouldnt know what disease i have TO THIS DAY and i would probably think im just crazy and im really imagining pain which doesnt exist and today its a fact its a disease and no imagination

What im trying to say: please dont give up. There is a reason you are in pain. If u feel like ur doctor doesnt put the afford in to help u or u feel like that isnt the correct care, u need to move on to find another doctor, maybe a doctor in another "special field" idk about the health system in ur country... I can't imagine in what pain u are with the RA and how hard it is to find a solution for ur situation but i believe you can find one. I guess it also important to do your own research as often u feel motivated too, do not always just believe what the doctor says.

I met someone in another forum about chronicle pain he was suffering like 5 years with heavy pain in his head and permanent dizziness, he didnt move much for years just in bed and doctors said "there is no solution, he crazy, everything is alright in his body". After 5 years someone told him about to check the atlas vortex and correct it if needed (healthcare over here doesnt pay that and usually they pay everything essential)

since he did that 3 years ago he living a normal life without pain and dizziness.

he was so close to cbt.. please keep fighting. when its about chronic pain doctors are wrong so often.

To come back to your question: I dont trust all doctors, i dont think all doctors want really help people. But im sure there are lot of good doctors everywhere so im going to believe what a doctor tells me but as long our brain is able to do our own research we should do it. As long we able to move on to a new doctor when we feel hopeless, we should do it.

Much love and all the best

 

[KuriGohan&Kamehameha]

I have never trusted any doctors, because all they've ever done is hurt me. They don't know how to treat chronic illnesses that don't have cut and dry solutions and have continually thrown antidepressants at me when I've taken over a dozens of the bloody things, because they don't want me to have actual painkillers.

I'm at the stage where the only things that could help me are experimental, and of course I'm not getting those. The entire medical profession treats people like infants who can't think for themselves or make rational decisions, they gatekeep everything to protect themselves from accountability.

When my partner put his foot down and said that I won't have any medical investigations, treatments, exams etc without my consent due to my PTSD, the GP practice filed a report with social services to say I was being abused and "withheld medical care" , and there needed to be a safeguarding investigation.

The reason he spoke up for me was because the staff at the doctor's surgery were blurting my whole traumatic history in the middle of an open street and I froze up with panic. The reason I am this way is because as a little child I was made to strip for no reason and touched by doctors against my will in ways that left me with permanent sexual trauma and ptsd.

I hope one day all of these pieces of shit are replaced with robots so they can't invalidate people or control their lives anymore with their biased, beuocratic rules and their free passes to violate peoples consent and autonomy.

 

[Cryptonite]

I swear, I've grown so much hatred towards doctors over the last couple of years...

To say they know NOTHING about my disease (Scheuermann's disease) is an understatement... I, as a mere patient, have to literally correct them every single time. Eventually I stopped visiting them. What a waste of time.

Out of 10-15 doctors, only one of them had around 50 % of information right. He is the BIGGEST specialist in the whole country.

 

[befree]

NO. I never trust doctors.

 

[LongtimeLoser]

My doctors are awesome. I moved about 5 years ago and have to travel almost 3 hours to see my specialist. I refuse to get a new one that's closer. I've been his patient for 15+ years. I've had to switch my primary doctor a few times, but they are easy to find and work with. My doctors will do anything for me. You should seek out a new doctor until you find one that's right for you.

 

[partialhang]

Really seems like health care is a joke.

 

[Cryptonite]

Really seems like health care is a joke.

Yes, the only difference is that jokes are funny, while this is extremely sad and tragic

im so sorry for you my english is a bit bad but ill try to explain my opinion

doctors are just humans, most of them are always very busy. Sadly most of them dont have enough time during the day to even think about a solution for each patient in pain, but often they simply just dont know how to help and than they just want to move on to the next patient, to not waste time..It took me 4 years to find a doctor to help me with a "simple" problem..(atleast its more simple than RA) it was sadly to late so im suffering in chronic pain in my whole head since 6 years…anyways If i would have listen to the first 5 doctors i met, i wouldnt know what disease i have TO THIS DAY and i would probably think im just crazy and im really imagining pain which doesnt exist and today its a fact its a disease and no imagination

What im trying to say: please dont give up. There is a reason you are in pain. If u feel like ur doctor doesnt put the afford in to help u or u feel like that isnt the correct care, u need to move on to find another doctor, maybe a doctor in another "special field" idk about the health system in ur country... I can't imagine in what pain u are with the RA and how hard it is to find a solution for ur situation but i believe you can find one. I guess it also important to do your own research as often u feel motivated too, do not always just believe what the doctor says.

I met someone in another forum about chronicle pain he was suffering like 5 years with heavy pain in his head and permanent dizziness, he didnt move much for years just in bed and doctors said "there is no solution, he crazy, everything is alright in his body". After 5 years someone told him about to check the atlas vortex and correct it if needed (healthcare over here doesnt pay that and usually they pay everything essential)

since he did that 3 years ago he living a normal life without pain and dizziness.

he was so close to cbt.. please keep fighting. when its about chronic pain doctors are wrong so often.

To come back to your question: I dont trust all doctors, i dont think all doctors want really help people. But im sure there are lot of good doctors everywhere so im going to believe what a doctor tells me but as long our brain is able to do our own research we should do it. As long we able to move on to a new doctor when we feel hopeless, we should do it.

Much love and all the best

It's ridiculous to how many doctors one has to go to get a proper diagnosis

I personally had to go to SEVEN doctors before I finally.... self-diagnosed myself with the help of the Internet

Thanks for nothing