I'm just diagnosed, though I have been having pain for years that doctors just ignored. My biggest problem is I am so angry that this has happened to me and and angry that the doctors didn't do something sooner; and I am so overwhelmed with the pain and the diagnosis. My husband keeps telling me I need to be positive, but I don't even know where to begin to try to be positive about this. I am feeling very sorry for myself and don't want to, but I just don't know how to turn things around. If you have gone through any of the emotions I am going through and found a way to get past them, please share with me how you did it and what worked for you. Thank you so much for "listening". Sheila
Sheila:
I myself have the same feelings as you do....many of us have or are going thru these emotions right now. For me this site has been the most helpful - just to hear others are going thru the same thoughts feelings and emotions really can help you. I am in an angry state I know this will pass but being on here seems to help me get thru it faster. everyone handles things differently but knowing that you are not alone or "crazy" helps so much. i hope that you feel better soon and sorry that you have to be one of us. Please dont forget you are not alone in this.
Trish
Dear Sheila
Welcome to our forum. I'm sorry you've ended up in our club, but I'm glad you're here.
I can so relate to what you say. My story is similar to yours: I had lots of problems, and my doctor just didn't connect the dots. Now the dots were faint, I do admit, but somewhere along the line I wish someone had twigged to the possibility that what was wrong with me couldn't be turned around by eating right, losing weight and exercising. And my anger goes back to my late Mother's doctor too.
I started with sore knees about 10 years back, and I had two total knee replacements within five years. Oh yes, and I was chronically tired. Then the foot complaints started: the doctor suggested orthotics and weight loss. X-rays showed nothing. Orthotics didn't help. When she suggested new orthotics, I got angry and went to a podiatrist who discovered inflammatory arthritis in my feet. I was officially diagnosed nine months ago. Now it turns out that the toenail fungus that I've had for at least 15 years is, in fact, psoriasis. Maybe the doc could have thought of that as a possibility when several attempts with anti-fungals failed. Yes, I'm angry. And when my dermatologist asked whether there was psoriasis in my family, I told her about the "eczema" in my Mother's ears (that's what her family doc said it was, anyway), and her deformed nails. The dermatologist sure that my Mother had psoriasis too. Maybe I would still have had my own knees now, if Mother's doctor had done a correct diagnosis of her "eczema", and I had known ten years ago that there was psoriasis in my family. Anger? Noooo .... not me!
Recently, I did some reading about the comorbidities of PsA:
- Hypertension: that, for no apparent reason, started 10-11 years ago, at about the same time as my sore knees.
- Metabolic Syndrome: that developed over the last 10 years.
- Depression: progressive decline over the last 5 years.
Those are the big three in the literature. I've got them all, along with nail changes. And for more than ten years, nobody considered that that what ailed me was anything except Seenie getting older, getting fatter, and getting lazy. Until the x-rays showed erosions in the joints of my feet.
My rheumatologist is still looking for the magic DMARD to arrest top this disease. I started with MTX, and did a trial of sulfasalazine and plaquenil with it. Those didn't work, so now it's leflunomide. If this doesn't succeed for me, I'll be getting a biologic. I do wonder if, when my knees started to hurt, someone had considered an inflammatory arthropathy ... yes, I wonder. But I guess there's really no point in that.
Somehow, PsA is a malady that gets overlooked and dismissed by the docs, at the patient's expense. Most "lumps" are benign, but when someone shows up at the doctor's with one, they sure hop to it to rule out something nasty! Too bad people with achy joints don't command the same concern.
Depression. Please don't confuse this with attitude. Yes, we have to be positive, but clinical depression is a malfunction of neurotransmission. That's as real as your PsA, and needs to be addressed. It may interest you to know that the inflammatory substances in our bodies (which are produced by PsA) mess with your neurotransmitters. There's an organic cause to your depression, and you may as well get your doctor to help you with that sooner rather than later. And yes, keep a positive attitude!
Thank you for bringing up anger, Sheila, it felt good to vent with you.
Seenie
Seenie said:
Dear Sheila
Welcome to our forum. I'm sorry you've ended up in our club, but I'm glad you're here.
I can so relate to what you say. My story is similar to yours: I had lots of problems, and my doctor just didn't connect the dots. Now the dots were faint, I do admit, but somewhere along the line I wish someone had twigged to the possibility that what was wrong with me couldn't be turned around by eating right, losing weight and exercising. And my anger goes back to my late Mother's doctor too.
I started with sore knees about 10 years back, and I had two total knee replacements within five years. Oh yes, and I was chronically tired. Then the foot complaints started: the doctor suggested orthotics and weight loss. X-rays showed nothing. Orthotics didn't help. When she suggested new orthotics, I got angry and went to a podiatrist who discovered inflammatory arthritis in my feet. I was officially diagnosed nine months ago. Now it turns out that the toenail fungus that I've had for at least 15 years is, in fact, psoriasis. Maybe the doc could have thought of that as a possibility when several attempts with anti-fungals failed. Yes, I'm angry. And when my dermatologist asked whether there was psoriasis in my family, I told her about the "eczema" in my Mother's ears (that's what her family doc said it was, anyway), and her deformed nails. The dermatologist sure that my Mother had psoriasis too. Maybe I would still have had my own knees now, if Mother's doctor had done a correct diagnosis of her "eczema", and I had known ten years ago that there was psoriasis in my family. Anger? Noooo .... not me!
Recently, I did some reading about the comorbidities of PsA:
- Hypertension: that, for no apparent reason, started 10-11 years ago, at about the same time as my sore knees.
- Metabolic Syndrome: that developed over the last 10 years.
- Depression: progressive decline over the last 5 years.
Those are the big three in the literature. I've got them all, along with nail changes. And for more than ten years, nobody considered that that what ailed me was anything except Seenie getting older, getting fatter, and getting lazy. Until the x-rays showed erosions in the joints of my feet.
My rheumatologist is still looking for the magic DMARD to arrest top this disease. I started with MTX, and did a trial of sulfasalazine and plaquenil with it. Those didn't work, so now it's leflunomide. If this doesn't succeed for me, I'll be getting a biologic. I do wonder if, when my knees started to hurt, someone had considered an inflammatory arthropathy ... yes, I wonder. But I guess there's really no point in that.
Somehow, PsA is a malady that gets overlooked and dismissed by the docs, at the patient's expense. Most "lumps" are benign, but when someone shows up at the doctor's with one, they sure hop to it to rule out something nasty! Too bad people with achy joints don't command the same concern.
Depression. Please don't confuse this with attitude. Yes, we have to be positive, but clinical depression is a malfunction of neurotransmission. That's as real as your PsA, and needs to be addressed. It may interest you to know that the inflammatory substances in our bodies (which are produced by PsA) mess with your neurotransmitters. There's an organic cause to your depression, and you may as well get your doctor to help you with that sooner rather than later. And yes, keep a positive attitude!
Thank you for bringing up anger, Sheila, it felt good to vent with you.
Seenie
Seenie, so much of what you wrote, it is my story, about losing weight, laziness, aging etc. They always had an excuse for why I felt the way I did. Doctors couldn't find anything so it must be "all in your head". I started to feel like I was crazy. In a way it was almost a relief when the rheumatologist I see now have me the diagnosis. I had an aunt with "eczema" which was probably psoriasis. My Mom has skin problems as well and I'm waiting for a flareup on her to see what it looks like.Like your PsA, mine started in my knees and they will need to be replaced soon, I am sure. I also have feet problems and was going to order orthodics next week. (I think I'll save my money). One thing you said that made the lightbulb go off was that you had a fungal infection on your toenail. Guess what I have had forever? I guess I have a lot more reading to do.
Thank you so much for responding. It has helped me more than you know.
trishdett said:
Sheila:
I myself have the same feelings as you do....many of us have or are going thru these emotions right now. For me this site has been the most helpful - just to hear others are going thru the same thoughts feelings and emotions really can help you. I am in an angry state I know this will pass but being on here seems to help me get thru it faster. everyone handles things differently but knowing that you are not alone or "crazy" helps so much. i hope that you feel better soon and sorry that you have to be one of us. Please dont forget you are not alone in this.
Trish
Trish, Thank you for replying. It helps so much to know that I am not alone in this, though I am so sorry for anyone who has PsA. One thing you said hit home with me so much and that is knowing that I am not "crazy". I really started to believe I was because I knew how I felt, yet all the doctors were telling me that nothing was wrong. Thank you for taking time to reply.
Shiela dear, Sounds like we're singing from the same book. When I said the orthotics didn't help, I meant they didn't help the disease. But they are essential for me in order to walk at all. Get some.
I excused the sore knees as being the result of a long career in the classroom. The depression was my ailing Mother. The sore feet and the metabolic syndrome, well, that was my own fault. I remember falling out with a friend about a year ago, and I finished it by saying "I'm nuts, there's something really wrong with me ...". And I'm about the most conciliatory person I know. When I finally got a diagnosis, I felt validated, but also very very angry.
You asked what helps with the anger. That's a good question. I think venting is therapeutic. Thanks.
Seenie
Hi Sheila and welcome. Briefly, I'm not diagnosed but have many, many of the symptoms. I can understand your grief and anger over all that you've lost as a result of the lack of a diagnosis. This disease is certainly frustrating when it comes to pinning it down medically. Several PsA people have shared with me that it's taken years for them to be diagnosed. Like you. Anger is, not surprisingly, a component of this disease and why not? Why shouldn't you be angry as hell about getting a painful, life-altering disease that doctors missed for years? In fact, I think it's healthy to get angry, so you can let out all of the pent up grief. And then work up the strength to keep on fighting the disease.
I'm just coming to terms with being so ill myself so can't really give many tips on how to handle it but I WILL say that the people here are truly fantastic - all of them - and have wonderful words of wisdom, kindness and advice. Keep coming back here and I think you'll find some comfort and renewed spirit from being around them.
Oh ho, don't I know how you feel! My rheumatologist treated me like I was a big bother and could barely stand me. My tests show nothing unusual as of yet but I have tons and tons of symptoms that correlate with this nasty disease, including a family history of psoriasis and rheumatoid arthritis. Like you, I feel crazy at times, but unlike you, my tests are still saying, "normal," whereas my body is telling a very, very different tale. I'm glad for you that you FINALLY got a diagnosis and can now get help. Truly better late than never.
Petunia
Trish
Trish, Thank you for replying. It helps so much to know that I am not alone in this, though I am so sorry for anyone who has PsA. One thing you said hit home with me so much and that is knowing that I am not "crazy". I really started to believe I was because I knew how I felt, yet all the doctors were telling me that nothing was wrong. Thank you for taking time to reply.
Welcome to the group, Sheila,
You have every right to be angry, just the process of getting this far is infuriating, it took me over 7 years. Mine was kicked off by a car accident that I just could not get over, had I not finally gotten an overlap syndrome diagnosis that pointed the way to autoimmune, we were going to pack up the suit cases and head to the Mayo Clinic, and stay until we knew something.
As you go through the website and get to know us, you will see the anger, frustration, pain, aggravation, but you will also see us talking about something silly and laughing, because it is part of life, and sooner or later you really will be able to laugh again.
This is a big learning curve, no matter what you may read on line or in a book, you will also learn much here, mostly all of it is right, what isn't will be attacked and debunked in a hurry. You will also learn from your body, it will tell you when you have done too much, or even too little. It will tell you if you are responding to a new med, or a physical therapy that may be too much for you at the time.
Vent away, scream, cry, we all do! Every single one of us, and we are all here for each other.
Please feel at home here and know that we are all here for you!
We really do know exactly how you feel!
SK
We have so much in common. I am still dealing with the anger as well, however, it is coming out in the wrong ways. I have all of the fore mentioned issues - Seenie and my stories match completely accept I still have my creeky knees. For me, the anger pops out when I am hurting and gets misdirected to the wrong people. Hubby gets the brunt of it, but we do have issues with our marriage and it seems to be forcing us to talk about it. My advice would be to channel it into something positive. I know, easier said than done and the anger eats up the energy that is so scarce in our situation. That is why I try to do something positive with it. So many people do not know about this disease (including some of our doctors) so I try to research it and share what I discover with others so if they are experiencing this, they may realize it before spending lots of time and money trying to find out what it is. Up until recently, I didn't know anyone else with the disease and this site has been such a tremendous help in learning about it and meeting others with the same affliction.
Welcome, welcome. So sorry you have a reason to be here, but glad you were able to find us.
Been there, ohhhhh been there. All I can say is that in time you will make peace with this condition and with your body - do not lose hope. Until then, I suggest locking yourself in your room when you have some energy and just beating the crap out of your bed linens/pillows/etc., until you're able to cry and just start getting it all out because there is healing in that.
I have personally found writing about how I feel to be very, very helpful. I hope you'll find this place to be a very welcoming and accepting environment where you can share how you're feeling, and what you're struggling with openly and freely. :) Having a place to share without the worry of "burdening" family will probably help you get past the anger immensely.
You're a strong person. You will get through this. There IS hope and it WILL get better. It's just a matter of finding the correct combination for you. <3 God bless!
Hello and welcome, Sheila!
There is a lot to get angry about with this diagnosis. Please know that this is a safe place to come and express your anger and ask lots of questions. Now give yourself a pat on the back because anyone that has been dealing with this disease (diagnosed or not) must be a strong person. Get angry at the disease and come out swinging with both fists! Research as much as you can and be your own best advocate.
Hi Hopeful and Sheila,
How are you doing today? I am hopeful that you are feeling better and enjoying something fun!
Hi Sheila! Welcome to this site. I'm so sorry about your diagnosis. I know you must be going through a HECK of a lot anger and grief and denial right now. And why not? Why shouldn't you be angry? Who the heck sits there and is happy or peaceful when finding out they have a debilitating illness? You've just been told that yes, you do in fact have this disease. So go ahead and be angry. And this is a great site to come to in order to vent that anger because people here have gone through it or are going through it too. People here will listen and offer comfort and advice. It really does help to work through your feelings by talking to others in the know.
Hi Sheila,
I was officially Dx in Nov. I too have the feeling of anger, confusion and of hopelessness. I think for me the hardest part of it is not knowing what I am going to feel like when I wake up in the morning and the "if and how long will it be before I'm in the chair". As with most people on here, I think what helps the most is knowing that I'm not alone, that others are going through what I am. It is amazing, we all have pain in different parts of our body, yet we all have the same feelings.
I decided to try out yoga (not the standard stretching class yoga) full yoga. Body, mind and spirit. It may not heal me from PsA Spondylitis, but it is a way to help me find inner strength and peace.
Hi Sheila!!! I had years (since I was five, maybe? ... I was diagnosed when I was 36!) of doctors telling me it was all in my head, it was growing pains, etc. etc. etc. For me, diagnosis was a relief. I wasn't crazy. I had an illness, and a pretty sucky one at that. In fact, I have the most aggressive PsA/spondylitis my rheumy has ever seen. I have damage and fusions that will provide me with chronic pain for the rest of my life.
That said, for me, the shift in perspective wasn't difficult. With or without a diagnosis of PsA, my pain would be the same, however, my prognosis and my health would NOT be the same without the diagnosis. WITH the PsA diagnosis, I'm taking medication that has slowed down the damage, drastically improved my health and has changed my life for the better. I'm also blessed by this horrible disease. PsA (or Sproadic Artie, as my daughter calls it!) has slowed me down so that I may better enjoy life, my family, and my friends. It has brought to light other health issues, which I'm now dealing with. It has allowed me to change the way I perceive life and to be more thankful for the myriad blessings life has to offer. For me, blogging helps. I write about everything from Sporadic Artie to parenting to personal stuff. (rannygahoots.blogspot.com)
Hi Sheila - I'm so sorry that you have PsA. But I'm very glad you have found us. I'm very new to this group but I've had PsA for over 20 years...just formally diagnosed 6 months ago.
I want to be able to say something to help you get past the anger but I honestly think it is the first stage of the process. So don't beat yourself up about feeling angry right now. You will move toward acceptance and at some point you will be at peace.
You know anger isn't a "bad thing" even though we seem to be taught that. Anger CAN be the beginning of a plan. You can let the disease control you and define who you are OR you can set up and win little battles.
It may be as simple as buying a garbage can on wheels. Or teaching your kids to play pinochle..... (they can learn at 4 pretty easily) and redefining family time. I taught my 13 year old granddaughter to make Gluten free waffles she freezes them wraps them and has sold enough at the farmers market to buy an Ipad. Now they don't mind Grandmas and Grandpas weird food.....
One other quick word about anger... No one would hurt anyone they love on purpose would they??? No mom would fail to take an arrow for their kids nor would they put one in a parent (well maybe my Granddaughter would when she lost her screen time last night)
The point is this is a genetic disease. Our anger teachers our kids who COULD get it a Bad lesson and lays a guilt trip on out parents......
Thats a a pretty good motivator to begin to move on.
Thank you everyone, for your support. Sorry for the delay in responding, I needed surgery for my shoulder and needed to "pretend" I didn't have PSA for a short time. I think some of the anger is being replaced with some denial. I keep hoping that the doctor is wrong, and I don't have this rotten disease. It's been really kicking my butt now as I have had to stop the methotrxate because it's making my liver values worse. Now I need liver surgery for a lesion to be removed in 1 month and am stuck with taking only Aleve for pain. I wouldn't wish this disease on my worst enemy. I am trying to get through this. That's all I can do.
Your story scream volumes to me! I went misdiagnosed for well over 12yrs.. I was 19yrs old when my left knee starting hurting.. badly.. I was pregnant with twins at the time.. I have NOT been able to squat since my 1st pregnancy.. I have been to over 10 different orthopedic dr.'s not including MD's.. I was told OVER AND OVER AND OVER again I had patella femeral stress disorder.. You want to know what that means... PAIN under the KNEE cap... well DUH!!!!!!!!!!!!!! I got to the point whenever I would go to another dr. I would literally break down in tears every time to the point I couldn't talk.. After a orthopedic BREAKING my shin bone and leaving me in a wheel chair for MONTHS, my knee freezing because of his shotty work... left me incapable for almost an entire yr and 3 surgeries later.. all the swelling was back.. so he wanted to do another surgery and more cortisone shots (those things are like a semi truck hitting your knee) I refused.. He sent me to a Rheumatologist.. I went in just like all the other dr.'s offices... trying NOT to burst into tears.. Within just a short hour.. he diagnosed me with PsA.. It was a RELIEF.. not that I had some disease, that let's face it NO ONE believes unless they HAVE it... but that I wasn't crazy.. or lazy or a wuss and couldn't handle any type of pain... I wasn't just a "complainer" I really HAD something!! and NOW, there is hope for a better future than I thought was possible.. because by the time I was finally diagnosed, I could barely walk.. Prednisone made me feel like a teenager again.. of course only the highest dosage gave me relief and I knew I couldn't stay on that for long.. But Remicade has changed my life.. opened up new doors and new hopes of endless possibilities.. Angry.. I was angry at all those dr.'s, family members, so called friends that dismissed me.. Furious at the dr. that maimed me for a yr. But OH SO THANKFUL someone understands.. someone is willing to help me.. and that God has given someone the knowledge to make these meds that can change our life.. I understand your situation all to well... and though I am sorrowful you have to go through it, I am thankful that I am not alone.. and you are not alone.. I hope you find the right meds.. the right dr.'s and your life starts to make a turn for the better.. SOON! <3