Desperately need help!

General
1

Hi Everyone,

Thankyou for all your warm welcomes!!! :)

I have been unwell for a few years now. I will spare you all the details and just say my Doctor thought it was a classic presentation of RA due to lots of joint pain and fatigue. She sent me of to a Rheumatologist who acted as if I was some bored housewife with nothing better to do!!!

Over the next few months the skin on my hands got really thin and translucent with lots of telangiectasias, and slight deformities of my fingers, so my Doctor sent me off for a second opinion. That appointment was even worse and I was out the door in 15 minutes!!! I few weeks before the appointment a had developed really sore ankle joints that were waking me up in extreme pain....she barely paid attention to that. I recently ended up going to physio for my swollen inturned knees and he said that while my knees are bad, my ankles have bone spurs on them and the joints are very lose and he felt it was an inflammatory problem.

My bloodwork is all negative, and I am now wondering if the sores I have on my forehead and scalp are psorasis and perhaps I have PsA. I only have a small amount so I am unsure. I also have a few pits in most of my fingernails. My index and middle finger are also starting to twist and my knuckles get red and sore.

Sorry for the long post BUT does this sound like PsA.....can you have it with a small amount of psorasis? Thankyou in advance for any replies!!! :)

Sunny

2

Hi Sunny your in Australia..it's winter there now?

I am sero-negative, diagnosed with RA 17 yrs ago...my worst complaints then were knees and hands. My feet, were messed up since birth, anyway, so they were not sure about that...or prob left that to the ortho's, since my feet were already fused surgically.

It's crazy, didn't the arthoscopy pathology reports, for scopes on my knees, show specimens of tissue tan/yellow...similar to RA/lupus?

CUrrent rheummy, #8..i asked her that, she says she is an arthritis doc, patholgist isnt...huh?

So i did get the peelings, took a couple of rheummies, and skindocs..pustular psoriasis..palms/soles.....and now i am getting remicade tomorrow, and listed on my chart as psoriatric arthritis

It's sometimes hard to diagnose psoriatric....am sure others can tell u a lot about that..but however, it's basically the same meds for RA or Psoriatric

take care and keep on pushing for a diagnose..take care

I am new to this psoriasis thing too, but can have psoriatric without the peelings...Hard to detect, one rheummy said . Some have the peelings, and get the joint damage later

3

Yes it is winter here in Australia and I am in one of the coldest states, which is probably why I'm in so much pain right now!!!!

I am sorry you have gone through so much..... I don't think I could see 8 rheumies for a diagnoses, the 2 I have seen have left me feeling like a complete hypochondriac!!!!

4

Oh, I'm sorry for your terrible appointments. I've had them too. Two doctors think it's PsA, and sent me to a Rheumy who blew me off. He told me the xrays didn't really look like PsA to him and went on to tell me what a great PsA professional he was, etc. So here I sit, with moderate scalp psoriasis that comes and goes. Family history, my brother has plaque psoriasis very bad. My dad has it on his scalp and forehead like me. So about 4 years ago I started getting the worse joint pain, swollen knuckles, can't even move my hands when I wake up each morning, My fingernails are pitted. My knuckles, and elbows, and feet are so sore and it takes me 30 minutes to get going each day. But, not a firm diagnosis. So, I feel exactly as you do, like they think I am a hypochondriac or something. I also live in Michigan, with some cold snowy winters, and that time of the year is the worst.

Hang in there! Welcome to the group!

Lainee B.

5

Hi Sunny

I know the frustration you must be feeling Im in Australia too and it's very cold at the moment which does'nt help with the pain,I was diagnose two years ago and you know when something is not right I was in my mid 40's and getting around like a 90 yr old and thought it was because I was getting close to going thru menopause I put up with this for a long time the morning were really bad ,then I ended up with a painful toe and thought I had broken it, this went on for a few months then the toe on the other foot went the same so I figure I must be kicking my toe on something and braking my toe and this went on for months too, then I went to my boss whom is a doctor and he sent me for some blood tests that all came back negative and then sent me for a test where they injected me with this radioactive stuff and done a body scan which show up the inflammation ,I lit up like a Christmas tree plus had a stress fracture on the bottom of my foot so the Dr decide to send me off to a R hematologist he gave me a referral which stated I did not have any skin conditions ,and i had a couple of patches which I thought were eczema and I always had scalp problems ,so I said to him" I have these skin problems" he had a look and said this changes everything ,so he done a biopsy and it came back as psoriasis from there I went to the Rheumatologist and got diagnosed ,now the jigsaw puzzle started to come together but it had taken a few years and tests and I work for GP's and it is hard when you know something is not right and the tests are coming back negative ,it took one Dr to hit it on the head so keep trying until you get your answer .Im still learning about my condition because it does'nt just affect my joints but my whole body is in pain and after reading about others that they suffer the same sort of pain. I wish you well !!!

6

Hi Sunny,

Approximately 15% of PsA sufferers either get psoriasis after they get arthritis, or never get it. I had a patch of psoriasis on each knee the size of a 5 cent coin that showed up about 3 months before the joints flared, and have had some scalp psoriasis for many years that was so mild I thought it was dandruff.

I am negative for RF and CCP, but they can take a couple of years after onset to show positive, particularly in young(ish) people, so that doesn’t mean much.

I am here (on this forum) because I have conspicuous tendon inflammation and spinal inflammation, both of which are common in PsA, and relatively rare in RA. I don’t have the fingernail pits, which you’ve obviously figured out are classic PsA.

My Rhuemy just calls it seronegative Polyarticular inflammatory arthritis, and he’s treating it like seronegative RA. In Australia, that’s actually preferable, because it’s easier to qualify for certain tests and treatments under Medicare if you have RA (so I dropped the issue after the first argument when he said he wouldn’t diagnose PsA without dactylitis).

It sounds like your trick will be to get them to acknowledge the inflammation part, I’m assuming in the absence of big puffy swelling.

I’m really sorry this has happened to you. My Rhuemy was all lined up to treat me like a bored housewife too (but thanks to this forum, I was forewarned how common this is).

The best thing I did was take a support person (in my case my husband). He was able to describe objectively how it had changed my functionality, which seemed to appeal to the Rhuemy a lot more than any subjective description of pain. It was also useful being able to demonstrate swelling where it wasn’t necessarily obvious, like my wedding and engagement rings just suddenly not fitting any more.

I think you should persist though - perhaps with a new Rhuemy if you can find one. Alternatively you may need to consider a non-inflammatory degenerative joint disease. “loose” joints as commented by your physio are the opposite to normal inflammatory arthritis behaviour (though everything else is consistent). You could also consider asking your GP to prescribe a short prednisone burst to see if it’s effective. Systemic Steroids are unlikely to give you significant relief unless there is systemic inflammation present.

Anyway, I know how hard it can be even getting to a rheumatologist, and how incredibly dismissive they can be, so good luck.

7

Dear Sunny,

So sad we have to go through this, I have seldom heard of anyone who hasn't gone through this at least once. My first Rheumatologist spent hours with me, looked me over everywhere except the areas that my under clothing covered, had reports from my GP and disagreed with everything, even Fibro, even with a false positive for Sjogren's.

Finally got in to my present Rheum, he sent me a very detailed questionairre that I took to my GP to help me fill out. By this time the Sjogrens has showed up positve, he knew what I had before he even looked at my fingernails, but said there was the confirmation, the pitted nails. I have never had one bit of dandruff or Psoriasis, but told him all my grandkids did, but they got it from their other grandmother, he said, "No, they got it from you" and I found out later that day my grandmother had Psoriasis with her artiritis, and he had insisted that she did.

He told me that I had Fibromyalgia, Secondary Sjogren's, Raynaud's and PsA, and that the first Rheum should have been able to easily diagnose me!!

The best thing I can tell you is to keep looking for the right Dr. People travel great distances to see my Dr, and I begged for him to take me, as he had to decide to accept me. He is also a University Professor and very busy, everyone waits at least 2 hours just in the waiting room, but I feel very fortunate to have him, hope you find yours! You deserve good medical care.

Wishing you well,

SK

BTW Second appointment further diagnosed me with Spondilitis, sent me for X-rays, he also noticed that my left leg and foot were swollen more than my right, I never noticed and neither did anyone else, I have Sciatica in that leg and thought that was what caused the limp, the X-rays showed joint damage and bone spurs.

Sunny there are good Doctors, just have to find them! Don't give up!

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Sunny, welcome to the board. We're not docs here, so we can't diagnose you, but all of us have our own stories of how we were diagnosed. In my case, I suffered for years with various complaints and pains. My skin, though, has always been flawless -- not a blemish on me! At one point years ago, I went to see a rheumatologist, who said I was depressed and shuffled me out the door. (Yup, it was all in my head.) Years later, I had two knee replacements, thought at the time to be from osteoarthritis. Then an erosive arthritis was found in my feet, so they knew it was something auto-immune. The rheumatologist started treatment for what she thought might be PsA, because she thought my nails looked a bit as if they had pits. It is so slight, though, that to see the pits you have to look at the nails against the light. The rheumy sent me to a dermatologist, who took one look and said "Pitting and ridging, psoriasis for sure." So there you have it. I have PsA. And that explains about twenty years of miscellaneous medical mysteries.

I have read that some people even develop the psoriatic arthritis, and then later the nail involvement begins. It's an odd disease, this one. I'd say get yourself to a dermatologist.

Wishing you luck! Come back and tell us what you find out.

Seenie

9

Thankyou for your support and your Personal Stories.......Reading them makes me realise I may have some time before I get diagnosed, but you have all given me some ideas on how to go about it!!! And Lainee B, as much as no-one wants anything to be wrong with them, I do hope you find your answers soon too!!!

I will certainly be sticking around and doing lots of reading. I don't know how much I will post as I'm not diagnosed yet but I will chime in when I can.

Thankyou again :)

Sunny

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Sunny, I like everyone else can seem to relate. And just like it seems others are saying, to get a diagnosis was not an easy task. I too had a lot of the same symptoms with my rhuemy looking at me saying that my x-rays don't look that bad. So being new to this, I went out the door accepting what he said. Until things started getting worse and I took about all I could take. I just so happened to be scheduled for a routine family doctor appointment and something he said to me really lead me on the path to getting a diagnosis and treatment. He said basically "if you want to accept what the rheumy said then that's fine, but think about the quality of life you have right now as a forty something person." That woke me right up! Then I realized I have to do what I have to do to try and make my life manageable. I guess what I am saying is what I learned is that if I wanted to find a diagnosis and treatment and if it was going to take 1,000 rheumys to do it...fine, then that's what it will take. But I won't give up until I am satisfied with the treatment I am getting. Because the other option is to live like the tin man from the Wizard of Oz. And why should I do that if there is a doctor somewhere that will help me, I just needed to find them. Thankfully I have and so far so good :) I wish you luck and hope things improve for you

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Sunny, please feel welcome to post anytime you like, we will always be glad to hear from you and help in any way we can!

sunny said:

Thankyou for your support and your Personal Stories.......Reading them makes me realise I may have some time before I get diagnosed, but you have all given me some ideas on how to go about it!!! And Lainee B, as much as no-one wants anything to be wrong with them, I do hope you find your answers soon too!!!

I will certainly be sticking around and doing lots of reading. I don't know how much I will post as I'm not diagnosed yet but I will chime in when I can.

Thankyou again :)

Sunny

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Livinday2day: You are right.....I am 37 and should not be feeling this way. I will continue on and find someone who will help me find the answers!!!! I am glad you have found yours. :)

SK: This is my first time on a forum.......it's nice to be able to have somewhere to come when I need some support and make some friendships in the process!!! :)

13

Hi Sunny! I'm sorry you're going through winter. Pain is so horrible then, isn't it? Of course, humid days are awful too.

Please don't feel like it's you about the rheumy. I had a horrible one too who made me feel like a hypocondriac who was BOTHERING him and WASTING his time. My pain mgmt doctor said that all rheumy's are like that! I'm trying another one this week, so we'll see. But I'm sorry you got two stinkers! I replied to my pain doc that with the pain that we're in, rheumy's should learn a bit better bedside manners.

As other have said, PsA is hard to diagnose. Many of the autoimmune diseases are like that. It's frustrating as heck for us. I wish there was a better, quicker way to get a diagnosis. Just keep at it and stick with your meds. Hopefully they'll kick in and help you feel better soon.



sunny said:

Yes it is winter here in Australia and I am in one of the coldest states, which is probably why I'm in so much pain right now!!!!

I am sorry you have gone through so much..... I don't think I could see 8 rheumies for a diagnoses, the 2 I have seen have left me feeling like a complete hypochondriac!!!!

14

I had the joint swelling for quite a few years before the skin lesions. I still only have 3-4 lesions. Was never dx until the skin lesions appeared. They kept telling me it was osteo and just take Motrin !! I have found this disease hits everyone so differently. Find a good doc. You have to be your own advocate!

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Thank you Sunny, you will find yours too. Just stay focused and willing to take whatever time it needs to in order to find the right doc. At least for me what I found was it was easy for me to just say ahhh heck with it and just "learn to live with it". But like I said in the earlier post, when my family doctor said to me what he did, it made me realize I was just settling. Really in a way I guess I was giving up and was just going to accept the treatment I was getting. My family doc even had a straight up conversation with me and encouraged me to pursue other treatment methods because I think he realized I was kind of oh well. His words and actions were the motivation I needed to find the quality help that I needed. I have a follow up with him for the first time since I got my real treatment and I look forward to seeing him so I can thank him for kicking me in my backside to get me moving :)

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That is a DARNED good doctor!

Livinday2day said:

Thank you Sunny, you will find yours too. Just stay focused and willing to take whatever time it needs to in order to find the right doc. At least for me what I found was it was easy for me to just say ahhh heck with it and just "learn to live with it". But like I said in the earlier post, when my family doctor said to me what he did, it made me realize I was just settling. Really in a way I guess I was giving up and was just going to accept the treatment I was getting. My family doc even had a straight up conversation with me and encouraged me to pursue other treatment methods because I think he realized I was kind of oh well. His words and actions were the motivation I needed to find the quality help that I needed. I have a follow up with him for the first time since I got my real treatment and I look forward to seeing him so I can thank him for kicking me in my backside to get me moving :)

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I completely agree Petunia Girl, I truly do feel blessed to have such a great doctor :)

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Sunny, I too am sorry you are having such problems finding a doc. I felt so fortunate that my chiropractor sent me to a great rheumy in 2002 who diagnosed my Fibromyalgia and eventually my PsA. Then we moved...the new rheumy said he totally disagreed with my previous rheumy and took me off all meds saying there was nothing wrong with me. Well 3 years later we moved again, and barely able to move ( I love the tin man description) I finally asked my GP for a referral to a rheumy. Well I'll be darned if at the first appt. he said why aren't you on any medication for your Fibro and PsA? I explained and he just stood there shaking his head in unbelief. So, yes, please keep pushing for a good doc. I am paying for no treatment for so long. I don't want you to have to deal with the consequences too. I am 54 and was feeling 90 most of the time. Now I feel 65 instead. That is improvement to me and I am happy with it (until my 88 y/o mother works circles around me). Best of luck with your journey and please feel free to post anytime like SK said, we are all here for the same reason. There are some really insightful people on this forum, I have learned so much from them.

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I'm so sorry..it is so frustrating to have crummy doctors' appointments, especially when you feel so rotten. It really does sound like PsA and I just don't think you've found the right dr. yet. I'm sero negative too but my SED level when I was finally diagnosed 18 months ago was pretty high and my dr. who I've since "divorced" did do a good job of being very thourough with bone scans and x-rays did find quite a bit of inflammation in my shoulders , neck and feet. I didn't have any psorisis at the time but he based the diagnosis on my family history-my son had Chron's disease and psorisis. I have since developed it although it's pretty well controled with methotrexate. I did get breakouts on my scalp and I still have pretty bad areas on the soles of both feet. Just keep trying to find a good rheumy. I finally found another dr. after my original cranky old man rheumy just would not listen to me, insisted I stay on Humira which was doing jack squat for my symptoms and really just making me sicker and the kicker was it just wasn't unusual to wait in the waiting room for up to 4 hours to actually see him with an appointment. I love my dr. now and doing much, much better . You will too..we may never be "normal" or completely pain free but we will be better.

Libby

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Sunny, I am fairly new to this site as well but just as Alma and many others have said, warm hearted people here and I can't say enough how thankful I am for finding this group. Hang in there and we can help each other along the way.

Alma.... the tin man reference is exactly what I told my rheumy. He asked me how I feel and what came to mind first was the tin man, so that's what I told him. :)