I am angry with my doctor

General
21

A culture is required to confirm a Dx of psoriasis. That is to insurance companies and manged care types. If the only place you have it is your nails its really hard unless they pull out your finger nail.......

Fibro once thought to be a mental health issue and eventually a disease is now becoming a "condition" Its not that it doesn't exist, it just that since pain management became a profit center for a number of medical practices (some states actually have store front pain management clinics) they have started to learn it can be caused, and really isn't the same thing. In some ways its becoming easier to get treatment for rheumatic diseases and in others more difficult. Pain is and will continue to be subjective.

As a result rheumatology has a bad rap (and honestly it in many cases deserved) within the medical community. Rheumys prescribe more (and more expensive) drugs than anyone. Doctor shopping is common with their patients looking for a "solution" in a bottle. My wife's brother found over 200 bottles of pills in wife's cupboard to treat her "chronic pain" prescribed from 5 different Rheumys. 12 weeks in Rehab fixed her problems and cured her "chronic pain" She started over. PT, a good NDAID and NO narcs/anelgisics. She still has "pain" but now she is in charge.

The problem with rheumatic diseases is like Mimi, they don't get Dx'd until there is damage. (and permanent) I have no personal knowledge of anyones REAL dealings with their docs, but I will tell you this Good sleep, good exercise, and anti inflamation meds is becoming the standard of care. The actual incidence of Hyperalgesia is becoming greater and greater. Treating causes of pain FIRST and the pain itself LAST as the best/first course of action is becoming more common. The problem is if there are any amounts of Narcs and other anaelgesics present the treatment of the source has NO WAY of being known whether or not its successful as analgesia may well be the cause.

A lengthy discussion with any doc as to his philosophy, course of action etc. is critical. They assume you trust them and are on the same page, and we assume they hear and understand us. You know what they say about ASSuME. It makes an ASS out of u and ME. Have the discussion before you start not week into it......You might be surprised at how differently things go...

22

Hi Amber:

Vent, vent, vent away, I was also diagnosed with fibro then treated like an idiot by a neuro-idiot. I have had PsA for a year and nine months and counting. Change your doc right away, that person does not have the right to brush you off you pay him for a service and if he does not care or deliver move on, when a doc tells you that there is nothing he can do, then he does not know what you have and that is his way of saying "Sorry I'm an ignorant idiot, please go to someone else". This illness hurts and it makes us feel sad, weak, frustrated and vulnerable, but I read you as a strong and wonderful person, keep on fighting this you can do this, do lots of research as i'm pretty sure you have done and work hard on your illness. One thing I tell everyone is that this illness had the bad luck of having me, it will not beat me. Always vent, kick and scream it sure helps me. :) :) :)

23

Amber, I am so sorry for your suffering and lack of attention by your doctor. He/she should be actively LISTENING to your concerns and pleas for help. It is time to find someone else who will listen and address YOUR concerns. You have every right to be treated by someone who is invested in helping you deal with the pain and truly listening to you. You need to find someone right now, don't waste another minute with a doctor who is not helping you find a way to live with PsA.

I too have severe damage already to L2-6 and I've only been diagnosed since mid June. I know that you feel frustrated with your own body, but you really need to move past that attitude, because it can be more crippling than PsA. Be frustrated at the pain and your uncaring doctor - place the blame where it belongs. I would love to hear more from you, really try finding another rheumy that can listerns as well as they can diagnose correctly. I will pray for you and keep you in my thoughts. Michelle

24

Re: numbness and tingling in hands and feet. Definitely pay attention to this, and get it checked out, but it's not time to be scared about it yet. I'm not dismissing your symptoms; no one should do that to you. I just want to tell you that there could be other causes, some of them not awful or related to PsA.

I have PsA and had those symptoms. (And like mimiB, while I definitely have PsA, I have NEVER had abnormal blood work, although I have had a lot of blood work.) The rheumatologist I had, who spent a lot of time on Planet Self-Involved, said of the numbness and tingling up and down from leg to toes: oh, that's not very good...blah blah...go home...don't bother me.

My regular doctor sent me to a pleasant, caring neurologist who checked things out and found that the numbness and tingling had nothing to do with PsA. She was great about sharing information with me and showed me my x-rays, "You have a herniated disc. Sometimes that's from an injury, sometimes a bit of bone will just crumble on its own as we age and you wake up with this pain, because it's pressing on nerves. You know, you could have surgery, or I could do steroid injections, but this is not a huge herniation. I'd make more money if you chose one of those options, but your body is going to heal this on its own, and if I were you, I'd take enough pain medication to stay comfortable, listen to your body and slowly ease back into activities. If you have surgery, you'll need to do the same thing to recover from the surgery. It's certainly your choice." She wrote me a prescription for pain medication, remained supportive, and the herniation has healed well with time.

Re: anger with your rheumatologist "who has the power to help me through this." Maybe not. This doesn't sounds like a very good doctor, with the knowledge and tools to help you. As you said, he just "brushed you off."

You're ultimately the one who has the power to help yourself through this. I certainly wish my rheumatologist could just make my RA problems go away, but he can't. However, he can treat me with respect, and give me information and treatment options. You sound like a really intelligent person, and as others have suggested, you probably want to exercise your power to find a better rheumatologist. One who will work with you. Is there an RA support group anywhere in your area? Can your primary caregiver suggest another rheumatologist? When I decided I needed to say goodbye to my first rheumatologist, I was kind of hopeless about finding someone better, but I just started asking people, and actually I was not surprised to get a lot of recommendations, because RA is, unfortunately, a common problem. I ultimately chose a doctor at a teaching hospital a couple of hours away. It's well worth the trip. I think I'm getting the best possible care.

I wish you the very best and hope that your pain and your feelings get better. I'll be thinking of you, and hope to hear how you are doing. I'm betting it's going to be good news soon, because it sounds look you've been getting poor care, and this may be what pushes you to demand the better care that you deserve.

25

Islamaah,

It sounds like you have peripheral neuropathy as I do. It is nerve pain caused by some sort of misfire in the brain. It was diagnosed by a painful test called an EMG that was given by a neurologist. I take Lyrica for it but there is a cheaper drug called Gabapentin. See a Neurologist about it.

Islamaah said:

OH dear! i have had the same issue too! for two years i have been to doctors for my spine pain and ankle pain. I am a dentist so i used to mention to them that i had psoriasis before and they would just nod and say not related. I finally decided to go to my rheumy when the burning in the hand and leg began and there he said it. PsA!! so the previous drs just wasted a lot of precious time. The MRI showed degenerative changes of 3 thoracic discs! My rheumy advised for enbrel. we don't have insurance here and i am afraid of its side effects. I have started MTX tonight. 7.5 mg as a start. I am 29 and still wanted to do some stuff in life! hopefully things will be better and it will just be a memory, and a lesson to learn from. I wish you all the best and that all ur pains are relieved. could you please tell me what ur doctor said about the tingling in the hands and legs cause i do have that already.

26

One of my closest friends has a lovely 20 year old daughter, she went back to her GP as he has been unsuccessfully treating her for Psoriasis she recently developed. She asked him if her joint pain could be related to the psoriasis, maybe PsA? (knowing about me she definately knew it should be considered) He told her there’s no such thing! I’ve lent her my copy of ‘PsA the facts’ to beat him over the head with! Its just a shame its just a diddy book…do they do a hardback edition? The Medical profession have so far to go!

27

Louise,

Can you tell me the full name of book and who is the author? I'd like my grown children to read and understand what I'm going through. They are very supportive but want to know more the 'mechanics' of the disease. Thank you in advance! I got great news this morning that my insurance company has approved my HUMERA request. They are changing me from Vicodin to Norco 10/325 and from everything I read on multiple websites, this pain medicine is really helpful for spine and back pain and that is where I have the most damage. YEAH, the future is looking brighter, Michelle

28

I was told many years ago that I probably had fibromyalgia. It's likely that I did have it, and still do. But over the past year or two I developed symptoms that seemed to indicate there was something else going on. Fibromyalgia is more of a muscle-ache kind of thing, but I was getting sharp pains that seemed to be centered around specific joints. I had trouble using my hands, severe plantar fasciitis/Achilles tendonitis in my feet, and the characteristic psoriatic abnormalities in my toenails and fingernails. That's when I began to suspect PsA.

The rheumatologist did a simple test to differentiate fibro from PsA. She put me on 10 days of prednisone, explaining that any pain due to inflammation would probably get better, whereas pain that is NOT inflammatory (i.e., fibromyalgia) would probably not improve. Since I did feel better, she concluded that at least some of my pain was due to PsA.

But I understand your problem with doctors having preconceived notions. Once they hear a diagnosis from a previous physician, it's as if their mind closes off and they refuse to consider any other possibilities.

I had this happen to me, with devastating consequences. In 2000, I started having frequent bouts of unexplained nausea. This went on for two years. Doctors told me it was probably "stress" and I would just have to live with it. Meanwhile, I was wasting away because for two years I was unable to eat anything except applesauce and plain white rice. I lost 25 pounds, and I was already a small person to begin with. Unfortunately, in my medical history it mentioned that I had an eating disorder when I was 15 years old (I'm 51 now). As soon as a doctor saw that, he assumed that my drastic weight loss must be deliberate and didn't bother to look for any medical reasons. I finally went to a different gastroenterologist who had enough sense to check my gallbladder function. Bingo! The organ was basically dead, and when I had surgery to remove it, the nausea went away. But I suffered needlessly for two years because doctors were prejudiced by a previous diagnosis.

Now, when I go to a new physician and they ask me to fill out a medical history, I no longer mention the eating disorder I had as a teenager, because that information could prevent me from getting a proper diagnosis and treatment.

29

Hikerdeb, gallbladder pain is horrendous…I’d rather give birth, I too wasn’t diagnosed for a while (18 months) and as I was 23 and didn’t fit the ‘fair fat and 40’ pigeon hole! it wasn’t looked at until the weight had just dropped off me and I was too week to look after my 18 month old son. Preconcieved ideas and trends do have a lot to answer for!
Michelle, the book is called. Psoriatic Arthritis the facts by Dafna Gladman (Professor of Medicine and Director of PsA programme at University of Toronto) and Vinod Chandran (Clinical Research Fellow in the Rheumatology Dept. University of Toronto) published by Oxford University Press
Its good to hear your news about your drug approval, hope that and the pain med works for you.
I’m just so thankful I can deal with my level of back pain with my new best friend … TENS machine. Trying it on my shoulder tonight (for the last hour or so) to see if it prevents me waking through the night when I roll on to my right side, so fingers crossed :slight_smile:

30

I love my TENS machine! Has helped me many times especially on shoulder and neck areas of pain. I didn't feel any relief in the lower pain areas. Thank you for the title of book and author. I will order it tonight. You are so young to have been suffering for so long!! I feel badly for you, truly!!! Hope the TENS works for you tonight and for many months ahead. Michelle

Louise Hoy said:

Hikerdeb, gallbladder pain is horrendous......I'd rather give birth, I too wasn't diagnosed for a while (18 months) and as I was 23 and didn't fit the 'fair fat and 40' pigeon hole! it wasn't looked at until the weight had just dropped off me and I was too week to look after my 18 month old son. Preconcieved ideas and trends do have a lot to answer for!
Michelle, the book is called. Psoriatic Arthritis the facts by Dafna Gladman (Professor of Medicine and Director of PsA programme at University of Toronto) and Vinod Chandran (Clinical Research Fellow in the Rheumatology Dept. University of Toronto) published by Oxford University Press
Its good to hear your news about your drug approval, hope that and the pain med works for you.
I'm just so thankful I can deal with my level of back pain with my new best friend ......... TENS machine. Trying it on my shoulder tonight (for the last hour or so) to see if it prevents me waking through the night when I roll on to my right side, so fingers crossed :)