Okay this is about my rheum diagnosising me with fibromyalgia. I am angry. I had this diagnosis before I was finally diagnosised with PsA. Once any doctor saw the chronic pain diagnosis they brushed off any pain I ever had. Including when I had pneumonia and finally had to be hospitalized for it. I am so angry because I went in due to extreme pain in my hips and spine followed by tingling ang burning numbness in my hands and feet. I’m also experiencing swelling in my feet hands and hips. My skin is warm to the touch. All my doc said after I told him was you have fibromyalgia and there’s nothing I can do to help you but you need to exercise daily for it to improve. No blood work or anything done. He just sent me limping and in tears home. My main issue with this is the PsA is in my spine and has been doing damage to it. I already have damage to multiple parts of my spine and was told by the spine specialist that if any tingling or numbness begin that it’s not a good sign. That was before I was diagnosed. I am angry that my rheum who has the power to help me through this has brushed me off. I don’t expect a lot of responses but I needed to get this out. I tried venting to my family and husband and they just acted like it was nothing to be concerned about. I am angry with my body and frustrated. Feel free to use this discussion to vent. Sometimes it helps to get it out.
I can well understand why you feel so angry…you put your trust in someone who was supposed to help you but instead left you with no treatment because of a misdiagnosis, especially with no blood work done. You were left with chronic pain and the idea in your head that maybe this was the best you could hope for. Unfortunately doctors are only human and do mess up too.
Its right that you vent, because you don’t want all that anger and upset bottled up inside you…when you can begin to process all that you will be able to move on, anger is all part of coping with chronic health conditions, but if you find you can’t get past the anger, try talking to a counsellor or therapist … Honestly it can help and sometimes friends and family don’t know how to help you, so they play it down, hoping you will feel calmer
Big hug X
It's right to vent. It might even be right to sue. But first you need to find a a good rheumy and get your body sorted out.
It's a HUGE thing to be concerned about! If you have PsA, your joints are being damaged. I think you need to get/see another rheumie ASAP. No way should you be staved off when the PsA dx has already been made. I know it must be hard to start over, but PLEASE find another rheumie and go. Look up the ratings/reviews of a doctor before you visit, to see if others like him or if they have problems with him. But you need to get on treatment ASAP and let this lazy doctor throw away his lazy dx.
I would be angry too. It is great you jumped on this support forum, because we all care 
Please find a decent Rheumy ASAP! Don't worry about the blood tests as much as getting x rays done. Both my regular doctor and rheumy have said the blood work is not always going to show if you have PsA or not. Are you saying you are not on any meds for the fibro or PsA? It took me a year or so to be diagnosed with the psoriatic arthritis. Once diagnosed it took no time to be on methotrexate. You need a diseased modifying anti-rheumatic drug to stop further damage to your joints. Ask him why you are not on this type of medicine. Please tell us what happens. Hang in there the best you can and don't take no for an answer.
I went though the same thing a couple of years ago. First I was diagnosed with Fibromyalgia, then it was Polymyaligia Rheumatica even though my CRP rate wasn't that high (he did take blood tests). Got into another Rheumy who diagnosed me with PsA. In my first Rheumy's defense, I had checked "no" on the psoriasis box because I had never gotten a definitive diagnosis for that from my Dermo (I only have it on my scalp and elbow). Once he put me on MTX, the PA all went away so that was a tell right there. My Dermo later confirmed the PA diagnosis and that's what clinched the PsA diagnosis for my second Rheumy. I've been told that this is not an easy diagnosis because there is no blood test for it and doctors are hesitant to put people on the lethal drugs for it if it may be something else entirely. I have had MRI's, bone scans, EMGs, X-rays, and numerous blood tests over the past two years to try and figure it out.
I also have neuropathy, mostly in my feet. Sometimes, they would just burn on the bottom. I take Lyrica for that now and it is helping a lot. I go to a Neurologist for that so you may want to think about seeing a Neuro doc too.
An aside - yesterday, I went to a PsA seminar in Bethesda, MD. My husband went with me and he thought it was very informative so he learned a lot about the disease. I feel like he finally gets it now!!
How disgusting! Find another doc immediatley No one understands pain unless you have had it. Find some other rheumy that will not waste your time. I am so sorry you are dealing with this. Come back and talk to us we have all experienced your issues some of us still are, we understand and can sympathise. I am thinking about you and sending you wishes for and easier day.
Amber, vent away. I’m feeling the need to let off steam myself, so it helps me to read posts like yours that make me feel less alone.
Wishing you a low pain day!
Seenie
It’s great to vent, but I agree with many other posts. You should find another doctor ASAP. Before my dx I went to my doctor but saw the PA due to the horrible pain I was having. He told me the same thing you were told. That I needed to exercise. That I was in pain because I didn’t move. I couldn’t tell him what he deserved because i was about to burst into tears and didn’t want him to see me. Something similar happened with the first Rheumy I saw, but I called my doctor and told her I wanted a second opinion. My current Rheumy is great and my insurance pays for it. Don’t give up! Keep looking for the right doctor. Good Luck!
Time for a new rheumy. When your doctor doesn't take all your concerns into account when setting a plan of action (and seriously he didn't even really set a plan of action with you) then he/she really isn't the doctor for you. With the next doctor I probably wouldn't mention the fibromyalgia since it doesn't have anything to do with the swelling numbness and tingling. I think a lot of doctors still think that fibromyalgia isn't a real problem since there's no test to diagnose it. Please don't continue to suffer. Seek out a new doctor that will listen to your problems and give you the treatment you need.
Hi Amber
I am in the process of being diagnosed and have run into similar issues. Have you found a new doctor yet, maybe the spine specialist can recommend a rheumy. I have found that when I like a doctor and ask who they would go to if they needed a specific specialist I usually find capable docs. If you have been suffering a long time without relief or a diagnosis your family is just as confused and worried as you. I have the same issue with my husband, I finally sat down with him calmly and told him that I do not feel supported or cared for when I talk about my issues and need help. I realized that he is as scared and concerned as I am but was afraid to show it. We have all been programed by society to believe and trust everything that comes out of a doctors mouth. So when your doc told you that all is well accept fibro (which is not well at all!) your family is thinking that it is true. It doesn't mean they aren't concerned just that they have been brain washed! I know how frustrating it is and I hope you find a doctor that will start from the beginning and help diagnose you so that you can begin treatment.
Thanks for sharing!
Thank you for all the loving support. I don’t know what I’d do without this group. I am working on a referral to a spine specialist and will be seeing a new rheumy ASAP. I contacted my GP with my concerns and she’s supposed to be getting back to me soon. I am continuing treatment for PsA and I will not let them stop that without a fight. I have a life again. They can’t take it away. I have PsA and according to the rheum it’s managed even though I woke up this morning in pain and with a PA flare on my eyelids and head. With some docs you have to be worse before they realize they can make you better. Thank you again! This support group has made my life enjoyable and understood. I hope everyone has a wonderful pain less day!
Wow! I sympathize with your plight. Blessings on your journey to find better doctors, help and answers. In the end, you will always be your own best advocate, even with doctors who are "good". Use your anger and frustration and turn it into tenacity.
One thing I have learned from this website is you all make me feel like i am not crazy or a hypochondriac. My rheumy tried to tell me last week that the joint burning, body aching, stiffness in my elbows/knees and severe fatigue have nothing to do with PSA. He suggested I exercise more and try to get more sleep. What? REally? what a great idea - I would love to have my old normal life back but clearly something is keeping me from getting back to my old life. I am done with that rheumy and moving on. there has to be something that can be done cause this is not my imagination! Some docs really need to think about what their patients are saying, and really listen.
Monica said:
It's great to vent, but I agree with many other posts. You should find another doctor ASAP. Before my dx I went to my doctor but saw the PA due to the horrible pain I was having. He told me the same thing you were told. That I needed to exercise. That I was in pain because I didn't move. I couldn't tell him what he deserved because i was about to burst into tears and didn't want him to see me. Something similar happened with the first Rheumy I saw, but I called my doctor and told her I wanted a second opinion. My current Rheumy is great and my insurance pays for it. Don't give up! Keep looking for the right doctor. Good Luck! :)
Looks like I'm arriving late, but I wanted to add my two cents. I think you might be surprised to learn how many of us have felt like we've received the brush off from medical providers. I've also heard from more than one participant, on different arthritis boards, that it seems to happen with more frequency to women than to men. That's sad if that really is happening to women.
It's hurtful and frustrating, and nobody likes to think about starting over with a new doc. But, I agree with other people here that you owe it to yourself to find a doctor you are comfortable with. There are good docs out there who will listen and treat you with the dignity and compassion you deserve!
When I read the symptoms of many of these autoimmune diseases they have so much crossover. How do you know which doctor to go to? What doctor tends to Fibromyalgia vs Psa? Help me narrow the list or point me to the right place. thank you
Hi Breckstar
A rheumatologist can screen you for fibro and Psa, a detailed history will be involved and a physical exam. Depending on what the doc finds on exam you may have blood work and x rays to help in the diagnostic process. Auto immune diseases are difficult to diagnose. Usually a blood work panel will be ordered that includes testing for Rheumatoid arthritis,lupus and inflammatory markers. Psoriatic arthritis starts with a history of psoriasis, I was diagnosed with fibro for years before psoriatic arthritis was diagnosed. Since fibro is a "catch" diagnosis for wide spread muscle pain it doesn't really explain the root cause of your discomfort. Good luck, if you have a good general practitioner she may be able to guide you to a good rheumatologist. As this discussion shows not all rheumatologists are created equal!
Which post was deleted? I see the one you posted an hour ago. I deleted a post that I started in reply to yours because I ran out of time. I don't think I could have deleted yours especially since I still see it above your most recent post. If it was deleted it was accidental.
mimiB said:
My post was deleted. Did I say something wrong ?