Hi, I am new to the forum and PsA. I'm still awaiting my first visit to a rheumy. I currently have a diagnosis of CFS and Fibromyalgia. I have started suspecting the past few years that my fibro was actually some sort of problem with the ligaments and tendons. I have many of the tender points, but also tender points that more closely match entithitis ( probably not spelled right, I seem to have lost the ability to spell)
I have had mild guttate psoriasis since age 13. hadn't considered PsA until recently. I have started having pain in my sacral area, the only part of my back that hasn't hurt over the years. my Mom had ankolosing spondyloarthropy, and asceptic necrosis on the femoral heads. she also had a diagnosis of fibro. that got me to researching and I found that it can accompany PsA.
long way round to say, I asked my doctor and she said I could possibly have PsA. I have an appt. with the rheumy the end of July. I admit to having a bit of PTSD when it comes to doctors. many years of CFS and fibro will give you some really bad experiences with doctors.
do any of you have similar problems and how do you deal with them? I'm trying to get ready for the rheumy visit. thank you for reading and any suggestions you could offer. MrsD.
Hi there MrsD and welcome! I am fairly new too, but most of us have had the "Doctor run around" before finding a diagnosis that actually fits all the symptoms.
Good on you for persisting in getting answers from your doc.
The guys in this forum are most supportive, helpful and a great ear when you want to rant. :)
I hope you find a Rheumy who you feel comfortable with and that you feel is listening to you and working with you, because at this stage I would think that is the most important thing.
Once you get a diagnosis, the next thing you need to do is ignore all the "experts" who can cure you with their <insert new age hippy wonder drug rip off here> and don't be afraid to try the course of therapy the Rheumy recommends.
Regardless, good luck and when you have seen your Rheumy this is the place to ask the questions and get the help
Hi Becstar, thank you so much for the welcome. I do know about the "this will cure you" miracles. :) with the CFS and such we have tried all the diet changes, and many supplements that were going to cure us, ( my daughter also has a CFS diagnosis) none of them did. I'm not opposed to the drug thing, I'm always careful about side effects. not sure I can take biologics as I have a positive TB skin test. I guess I'll cross that bridge if I get there.
I've had so many bad doctor visits, I'm really hoping this doc will at least listen and not treat me like a hysterical female. :) thanks again. MrsD
Welcome ! This is a great forum for information and support. You can also search for info using the top right corner search function. Good luck with your appointment - I hope you will let us know how it goes. I always have a list of questions for my appointments and it has been VERY helpful. I even ask my family members to help me with questions to ask.
Hi,Francis and Sybil, thank you so much for the welcome,and helpful suggestions. I’m starting to strongly suspect that. I do indeed have PsA. I’m working on compiling a list of symptoms and questions.
Thanks again for the welcome.AND for sharing your experiences with us beginners.MrsD
Hi, Mrs. D. I'm new here also (since March), and there is so much information from people who have had a lot of experience with the "disease(s)". Since asking for their advice and reading their blogs and the discussions, I have mustered up enough courage to go ahead with a biologic. I've been afraid of them, hearing all the scary TV ads. My rheumy told me 6 years ago to go on a biologic, but I wouldn't listen to him. He said he wouldn't let his mom or sister suffer with PsA pain and psoriasis--he'd insist they go on a biologic if ever needed. I still didn't trust him. Today I finally went to a doctor who helped convince me (although I was pretty convinced from all the info found on this site) to go ahead with Enbrel. She said, since you take it once a week, if you do get an infection or side effect you don't like, you can stop it and whatever it is you caught can be treated quickly. Whereas, if you take one of the biologics that's in your system for 3 months, you are sort of screwed if you develop an illness because your immune system is weakened and it's harder to recover during that 3 months. She also told me I shouldn't need Methotrexate and she thinks that it will be a med of the past in the future because the biologics have taken over. I told her some people say Methotrexate helps the biologic work better, but she said it's probably because they started on M-- and added the biologic. I just don't want to use M--- from reading up on this stuff, people who got infections while on biologics were more apt to get them if they were also on M--- or another DMARD. Good luck and keep us posted! I think your doctor is wrong with the diagnosis of fibromyalgia--especially since you have psoriasis and have had tendon pain, pain in your sacral area, and your mom's history. Too bad you don't have my rheumy--he diagnosed my PsA the first time he saw me!!! Although, my internist mentioned fibro first, before she sent me to him. I hate that, cuz when people complain of "all over" pain, it seems docs like to write it off as fibro, and a doc once told me they think ppl with fibro are just making it up. Uh huh, they should try feeling like this for awhile!!!!!!
Hi,Grandma J, thanks for the welcome.I think it would interesting to see how some doctors would react to being in a lot of pain and being told it’s all in their heads.LOL
I’m so glad you have good doctor that you like. Wish you luck with the biologic, I had always thoughts I would never take them,but reading here has me much more open to the idea.sure hope you see great results.
I’ve had pain since my early twenties,but only started seeing joint damage in my thirties. I had expected it was osteoarthritis,now I’m not so sure. Will see the doctor the end of July.till then,it will be read all I can. This site is wonderful for learning and support.
Thank again. Looking forward to seeing how you get on with your treatment. MrsD
Welcome Mrs D. One of the strategies I found useful when my Rhuemy couldn’t see my swelling (though I couldn’t get my rings on my fingers, and they were actually almost the least swollen of my joints - so I could certainly see the swelling), was to not focus on the pain.
To give concrete examples instead, of what you can do on a good day, vs what you can do on a bad day (usually wildly variable in PsA). Because most rheumys are men (apologies guys - I’m about to make a sweeping generalization that I know doesn’t apply to many of you), they often see pain as subjective, emotional, a weakness. Functionality though, they get (ie the engine ain’t working…).
Hopefully you get a great experience first time, but if you don’t, come back here, get support and persist.
I’ve seen the consequences of not persisting - which is why we always say “fear the disease, not the meds”
Hi,Jen.thanks for the suggestions.i don’t have a lot of swelling,just pain,stiffness and really enlarged joints in my fingers. No sausages, makes me wonder if maybe I have osteoarthritis instead do PsA. Ah,we’ll,I guess this self diagnosing is best put on hold.Lol.
As for male doctors and female patients,I’m afraid it isn,t just men. I think there is at least one class offered on how to treat hysterical females. I have had female doctors treat me with disdain also. When I told one that I have a history of a heart attack,but don’t know when,she looked at me and said “you did not have a heart attack,you have changes in your EKG!!” Well, I didn’t bother to explain that the thallium stress test disagreed with her diagnosis.lol I just found a new doc. You tend to get that kind to treatment when you have a diagnosis of CFS. I have to work hard at not expecting that reaction when ever. I see a new doctor.
I hope to have a good rapport with the new one. I may be wasting your time here as I don’t know that I have PsA,thank you all for being so kind and helpful. Hope everyone is having decent day. MrsD
Hi again Mrs.D. I noticed you mentioned you had changes in your EKG and a thallium stress test. I went to er on ambulance-er doc told me I had a heart attack and sent me to a heart doc for consultation, who did the thallium stress test and stopped the test after a few minutes and told me it appeared I was having another heart attack. She told me I needed an angiogram, which ruled out any blockage. From there I was told there was absolutely nothing wrong with my heart, and basically told me-after all that, this was all in my head! I worried for a long time, but my doctor kept insisting there was nothing to worry about. How does one not worry after all that? So you had about the exact same thing happen to you?! Is this a PsA thing??? The pounding heartbeat I had that time and 3 times since over the past about 13 years have just left me confused. My heart rate actually seems slower, but I describe my heartbeat like a cannon going off in my chest-it felt like my heart was about to explode. It only lasts a few minutes and it doesn't have any other symptoms of a panic attack. If you have more info on what this could be, please share. I wonder if others with PsA have had this happen?
sybil said:
I don't see you wasting our time, you are getting prepared - how else could you do that?
Mrs.D said:
I may be wasting your time here as I don't know that I have PsA,thank you all for being so kind and helpful. Hope everyone is having decent day. MrsD
Sybil,thank you so much! I am learning A lot here,and hope to be ready for my doctors visit. I really appreciate you kindness.
Grandma J, I’m so sorry you had such a scary experience! I really don’t think your heart symptoms are all in your head! If the doctor saw a problem on EKG and in the stress test, how can that be in YOUR head. Seems to me it was in the doctors.LOL. It is possible to have ray them disturbances that are freaky feeling but still harmless. So don’t live your life in fear,but if the symptoms return,especially if they don’t settle down quickly,you need to do just what you did and go to doctor.
I,too,had an angiogram that was clear. I think my problem happened when I was given a dose of Imitrex for migraine. I had all the classic symptoms of heart attack,chest pain radiating down my arms,into my jaw,faintness,nausea,etc. I told the nurse and she said “yeah,that happens sometimes” It was a brand new drug then and I don,t think anyone knew it could cause heart problems. It constricts blood vessels and mine just over reacted.LOL anyhow the testing showed scaring from an anterior septal infarct. Since I don’t take Imitrex after that I don’t worry about it.
I do have another hear thing that causes rhythm problems. It’s called PSVT,paroxysmal supra ventricular tachycardia. It used to be known as postural orthostatic tachycardia according to my doc. It’s related to the CFS,I think,a lot of people with the diagnosis have it. It,s usually not dangerous,but it can cause you to faint,etc. I usually don’t worry about it,I just have to be careful about standing for very long,especially if it’s hot.
I hope you are having a great day. Sorry for the long post.I just couldn’t figure out to explain without it. Blessings,MrsD
I think you will have a great appointment Mrs. D. The best advice you given is to always keep things in terms of cause and effect. When X then Y. As the discussion about heart issues clearly shows the least dependable of all information is a "symptom" I don't know any doc who will clearly say symptoms are any "your head" But he will rule out disease, problems that need treatment and determine that even with symptoms, there is nothing to do. The next least dependable thing is pain. Your "9" may be my "3" Its easy to concentrate on the pain and become focused on it. If there is no effect from your pain, there is little that can be done. You may hurt in 23 places, but that really isn't helpful information with out more information and specifics.
I know a little about hearts having spent a few years in the Cath lab way back when. Everybody has EKG changes. Everybody has runs of arrhythmia. Everybody has palpatations. Everybody has scary events. Heres the cool thing We can figure all that out and determine whether or not those things are a problem or not. When its not we move on. Patients who don't will see a drop in their care (that doesn't mean they won't take a look later on but it will be an "electrician" NOT a cardiologist.) BTW either you have had a "heart attack" or you haven't. Be careful using that term. A heart attack is not rhythm changes, ekg changes, or anything except death of heart muscle do to a blockage. The correct term is Myocardial Infarction. unless thats on your chart, you haven't had one. There are things that can change some of the less sophisticated tests that indicate an infarction can be happening, but they don't prove it. In my case I had a thrilling ambulance ride, went directly to the cath lab, had a surgeon on stand by, bad ekg, bad proteins, etc etc. And still have on my charts the note "Patient claims Taco Tuesday - he was right" I have had real problems since and real procedures (all PsA related,) but have never had a heart attack.
Anyway after that little detour good luck, I'm sure it will go well. Oh note every "skin irritation" no matter how small and how well hidden. Rheumys like the ones in your ears, belly button, and buttock seam. (They won't look generally, but as they are hard to diagnose anyway, they are good enough for chart notes an 2 points towards your score) Family history through 2nd degree relatives is also good any P, arthritis etc.
Welcome to our page! We have a great group of people here, and this is a great place to get good solid information. The first visit with a rheumatologist is always a nerve-racking an exciting one, and I feel the preparation is always key to getting the most out of your visit. You've gotten a lot of good advice already, so I won't pile on and confuse the matter. I did think it would be helpful if you had the list summarized for you, so that you could just look in one spot in case you forgot something. So, without further ado:
Don't be afraid of medications
Determine what is most important to you, stuff that you want to make sure that you cover during this visit, and make a list before you go
document/log your symptoms in terms of how they limit your function prior to your appointment.
don't let your past experiences with doctors color this new visit. Make sure you let go of negative thoughts so that you can have a productive appointment with the new doctor
I hope this helps you with your appointment with the new rheumatologist; and I also sincerely hope that PsA is not what you have. However, if that does end up being your diagnosis, this page will always be here for those who need it.
Now, I want to clear up some confusion about the cardiac conversation:
A stress test is not the "gold standard" for determining injury to heart muscle. The patient can go through EKG, stress test, echocardiogram and all of those tests can be positive for heart attack. However, when the patient goes through and angiogram THAT test then shows that there are no blocked arteries, and no tissue damage. It's also not all that uncommon for this to occur (i.e. EKG changes, positive stress test, positive echocardiogram and negative angiogram). our hearts to all sorts of weird things, and so our bodies. Some people have irregular heart rhythms that are absolutely benign. Doctors definitely want to check them out and make sure that they're not anything nefarious, but once that's done there's nothing more to do. I do get how that can make patients feel a little bit abandoned. The problem here is really a lack of patient education. I think if the docs spent a little bit more time with their patients letting them know what had happened, there would be a whole lot less confusion.
Mrs.D said:
Hi,Jen.thanks for the suggestions.i don't have a lot of swelling,just pain,stiffness and really enlarged joints in my fingers. No sausages, makes me wonder if maybe I have osteoarthritis instead do PsA. Ah,we'll,I guess this self diagnosing is best put on hold.Lol.
As for male doctors and female patients,I'm afraid it isn,t just men. I think there is at least one class offered on how to treat hysterical females. I have had female doctors treat me with disdain also. When I told one that I have a history of a heart attack,but don't know when,she looked at me and said "you did not have a heart attack,you have changes in your EKG!!" Well, I didn't bother to explain that the thallium stress test disagreed with her diagnosis.lol I just found a new doc. You tend to get that kind to treatment when you have a diagnosis of CFS. I have to work hard at not expecting that reaction when ever. I see a new doctor.
I hope to have a good rapport with the new one. I may be wasting your time here as I don't know that I have PsA,thank you all for being so kind and helpful. Hope everyone is having decent day. MrsD
Hi. I just spent ten minutes typing out a note only to have the cat jump in my lap and erase it! Who ever said pets make you love longer never met mine.LOL.
Thanks for the welcomes,explanations and suggestions. The reason I said I had a heart attack was that after the heart cath. The doc said “well it looks like you have an old anterior septal infarct,but everything looks good now”. Didn’t mean to mislead anyone. My problem with the doc was not what she said, it was the tone of voice and facial expression that bothered me. I don’t spend a lot of time worrying about my heart. The PSVT gives me bad days,where strenuous things like brushing my teeth makes my heart rate go to around 160, but that just means it’s a take it easy day. Strong family history of heart disease and stroke, and high cholesterol even on a vegetarian diet, doc said I just chose the wrong parents.
I only have mild psoriasis,some mild skin irritations that I never attributed to psoriasis. Sybil,I only have some mild vertical ridges,and my nails are changes shape somewhat. No pitting, or fungal looking areas.
Thanks again everyone. I really appreciate everyone’s kindness. MrsD
May cat is ALWAYS walking across my keyboard ! And head butts my cell when I'm trying to talk on the phone! I think he loves me and wants my attention :-)
Mrs.D said:
Hi. I just spent ten minutes typing out a note only to have the cat jump in my lap and erase it! Who ever said pets make you love longer never met mine.LOL.
Thanks for the welcomes,explanations and suggestions. The reason I said I had a heart attack was that after the heart cath. The doc said "well it looks like you have an old anterior septal infarct,but everything looks good now". Didn't mean to mislead anyone. My problem with the doc was not what she said, it was the tone of voice and facial expression that bothered me. I don't spend a lot of time worrying about my heart. The PSVT gives me bad days,where strenuous things like brushing my teeth makes my heart rate go to around 160, but that just means it's a take it easy day. Strong family history of heart disease and stroke, and high cholesterol even on a vegetarian diet, doc said I just chose the wrong parents.
I only have mild psoriasis,some mild skin irritations that I never attributed to psoriasis. Sybil,I only have some mild vertical ridges,and my nails are changes shape somewhat. No pitting, or fungal looking areas.
Thanks again everyone. I really appreciate everyone's kindness. MrsD
Agree 100% on the nail changes. Anything that you wouldn’t consider 100% normal! is worth a mention to the doc in your initial meeting for diagnosis. It could be important. I used to have the value that if it didn’t bother me, why bother the doc with it? Now, I’m sure to at least make a quick comment. Sometimes, it’s great info that the doc really wanted to know, other times not so much. I never know for sure.
sybil said:
In the unlikely event that your rheumy doesn’t check your nails, it would be as well to flag up your nail changes. Others may know more about this but I’ve tried to find out exactly what constitutes a ‘psoriatic’ type of nail and my impression is that any changes may be relevant. I certainly did not think there was much wrong with mine until my rheumy honed in on them.
Mrs.D said:
Sybil,I only have some mild vertical ridges,and my nails are changes shape somewhat. No pitting, or fungal looking areas.
Hi Sybil and GrumpyCat, thanks for tellin me about the nails. I would have not thought about asking the doctor about it. I look at my hands and think,“nope, no sausages or fungus” and think,maybe I’m just borrowing trouble. Thanks for taking the time to answer my questions.
hi Frances, oh,I am sure it is just she wants my attention. I usually see her coming and avoid the erasure, but she snuck up on today. She just loves to rub on my face,which makes me itch and break out in hives,and she is of the opinion that if the birds are singing I’m supposed to be up. The birds get up VERY early.:-). We have two kitties and a big doggy,all rescues. We do love them.
Thanks Sybil, glad you don’t have sausages either. Looks very painful. This really is a confusing situation,will find out Next month what I’m dealing with. I keep thinking maybe I’m wrong in suspecting PsA. Than you so much for sharing with me. MrsD