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Living with Psoriatic Arthritis (PsA)

Um.. Pain


#1

I started with a rash on my bum, about 15 years ago, the Dermitologist would give me a cream for it, and it would go away for a time, he called it Psoriasis, didn’t think anything of it.
Pain in all my joints, heels, knees, hips, elbows, shoulders, wrists, fingers, toes, neck… I was Dx’d with FMS for a while, and a. Luke of doctors suggest MS.
The Achilles tendons tore off the bone on the back of the heels about 12 years ago, knee pain off and on, more on the right side, hip and SIJ pain for 28 years, (still think that is As, but the doctor says PsA) bad finger and thumb pain, unable to close my hands some days, Voltaren Gel did nothing.
Fatigue for the past 10 years, brain fog, blurred vision, I don’t know if this is due to PsA?


#2

Hmmmm, Jon, it all sounds pretty familiar to me, both the symptoms and the runaround. Sad but true. In any case, welcome to LWPsA! You are no different today than you were before being diagnosed, except that you now can look forward to the possibility of feeling very much better at some point down the road of life. It usually takes a bit of time to get out of the “gap” between diagnosis and successful treatment, but in the meanwhile you can educate yourself about your new “friend”. The Newbies’ Guide is a great place to start. Go to the last page to see the “beginner” articles. (We must re-order those some day … sorry.)

Again, welcome. I hope that you will find this a good place for information and support.


#3

PS You asked about fatigue, brain fog and blurry vision. At the very top right of this screen is a small search bar. Search each of those, one at a time. :wink:


#4

Sounds like PsA pain to me! I had psoriasis for over 30 years before I was diagnosed with PsA and your symptoms sound a lot like mine, except my Achilles tendons, although they were sore off and on, didn't tear loose. I had crushing fatigue long before most of my other symptoms. I went on Enbrel one year ago and the improvement in my health--especially the fatigue, weakness and tendonitis is about 80%. I don't even remember how crappy I felt a year ago, but I know it was bad because I was fighting it for several years--scared to death to go on a biologic like Enbrel! It took finding this support group and their wise encouragement to convince me I needed to do something before the damage was too bad. And, yes, I do have a damaged back and feet and a few crooked fingers as a result of not treating the disease aggressively as soon as my rheumy started telling me to (which was 7 years ago). So, believe me, it would be wise of you to talk to your doctor about biologics and what steps you should take now to slow the disease.


#5

You could always answer the question, thanks for the heads up, I guess this isn’t as friendly a forum as I was told.



Seenie said:

PS You asked about fatigue, brain fog and blurry vision. At the very top right of this screen is a small search bar. Search each of those, one at a time. :wink:

#6

Jon, I'm sorry you're unhappy with the responses to your thread but I've read them and see two members who have said "yes, this sounds like PsA symptoms to me" and you've been pointed towards two of the best resources in this community, firstly our Newbies Guide where we have a number of post dealing with specific issues, including eyes and PsA and secondly to the search facility so you can also read previous discussions on specific symptom topics. There is also an excellent patient orientated book for you to discover that is mentioned in the Book Reviews section.

Of late the community has been a little quieter, I for one, hope this is a sign that our members are doing so well with their treatments that they are out and about getting on with their lives not feeling so poorly that they are stuck at home behind a computer screen.

Please also remember this is a peer to peer community and to get support it helps to give support. Have you joined in anyone else's discussions? It's been my experience that if I've not received all the responses I'd hoped for, a politely worded post something like 'thank you for your comments, is there anything else anyone thinks it would help me to do/know/look up?' is well received by the community. This is as opposed to being told they are not very friendly.


#7

Ah Jon. I thought, as a PS to my longer response that I could show you how to use our search feature. Many of us took months to discover the teensy search bar. And really, if you do give search a go, you will get an idea, from the number of “hits” of how common those symptoms are.
And so that you wouldn’t misunderstand the tone, I added a “winky”. I failed.


#8

As you pointed out yourself, those symptoms could be AS, sjogrens, lupus, diabetes, congestive heart failure and any one of several hundred diseases. There is a reason it takes years sometimes to get a disgnoses. you could go on anyone of a number of support sites and ask if you have their disease, and you would get a positive answer. You run to your doc with your latest Dr. Google cosult. Your doc because he cares or is a good business man will carefully listen dictate your notes so you think so you believe you are on to something. Even when he gives you the "We will have to look in to things more, maybe try xxxx for a few months and see what happens...." If you look at your actual chart there will be a pen mark on one of the early pages. it may not mean anything, but evert doc has a code system. that mark despite what ever else is in the chart is just a reminder to the doc of who he thinks you are. The two marks you don't want are for dr, google a nut case. From that point forward, every bit of your medical care will be based on evidence base protocol. Works about 80% of the time. So lets see what happens with the symptoms you gave. Seenie said yup sounds familiar. Heres where you can get some experiences to compare. All we have is our experiences we are not doctors, we can't diagnose and wouldn't if we could. But if you hang around you can share experiences and see where you have something in common. Fols might even help you prepare for a doc appointment and avoid marks on your chart.

Sadly right now every one of the folks here have only one impression of you and its not good. You jumped down the throats of the two kindest and most helpful folks here. I would have waited until my third post were I you. You see I only have interst in people who want to help themselves. Its alot of work to help yourself. You might even have to help others along the way or realize you can't sit on your ass which may or may not have rash on it and exoect answers.

We are more than willing to help. I can understand how when in pain and misery things slip out that ordinarily wouldn’t.
I’m reasonably certain everyone here is more than willing to give you a second chance at a first impression…


#9

Sorry if I sounded mean, I am under a lot of stress right now, waiting to see a oncologist to test for possible multi melanoma. I have also just started methotrexate,my first week, so this might be also causing some aggression. I had to go off gabapentin and lyrica because of the change in moods…

I guess the reason I came to this site, is to find support not confrontation. I also belong to two other Ben’s Firends forums, Lifewithlupus and livingwitherythromialgia. I realize I may not have started off on a good foot, so I will try again. Thank you for you patience.

I have already read all the medical papers on PsA and AS, but I did not find anything on neurotical effects of PsA. Previously, my diagnoses was SLE Lupus, the Neurologist dx’d it as SLE related, I have been on hydroxycloriquine for almost a year, with some results. I was also seeing a Pain Managment doctor for spinal pain, he ode red a MRI of the Lumbar region, which incednetly also showed erosion of the SIJ and inflammation. The Radiologist gave no reporting of this, he identified some disc degeneration and rupture, also a L6 transitional vertebra that was incroaching into the SIJ. I studied the MRI and noticed the holes eaten in my sacrum, so I copied the images to my iPad and took them to my Rheumy to view, her response was “what does the report say?” I told her to look at the photos and see for herself, pointing out the area of concern, she said I should get it checked out, I thought I was, by going to my Rheumy. I then consulted with a friend that is a MD, he called the Radiologist that wrote the report, he said it was just a overlap of images, with the l6 involvement. My friend told me to just accept what the expert was saying, then he showed the image to the head of Radiology at the hospital he works at, he concurred with the other radiologist.

I then took the images to my pain management doctor, he agreed that it was probably either AS or PsA, but I should go back to my Rheumy for more tests. She ran a series of blood test for the gene HBA- B27, and redid my ANA, and Elctrophooresis IFE that indicated a “Monoclonal garmopathy present consistent with IgM Kappa” this would be a possible Multi Melonoma. She also diagnosed me with PsA but really didn’t want to elaborate on other posiblities until I get a full body bone scan.
I should add that my Rheumy told me that the gene was positive, but when I got the Blood test they sent it said negative. She had explained that PsA will usually effect the spine with a positive gene, but as you all probably know, that is still only 50% of PsA patients.

My pain management doctor is planning a procedure to use radio frequency denervation of the SIJ, and also inject cortisone and pain medication into the joints, that is about all he can do for me, the rest will be with my Rheumitolgist.
Hope you are all having a great weekend!


#10

Hi Jon! You certainly have a lot on your plate. I don’t know how old you are but you certainly can have a few things going on at the same time. I had back problems in my twenties not related to PsA at all. My mom has type 2 diabetes and PsA. You get my point.

I totally get your frustration with being handed off. I had a brief moment where I was going to look for a new rheumy. I’ve been seeing the same doctor for eight years now. While there are moments that I’m less than thrilled with her, in the big picture, my care has been excellent and appropriate. I’m not a huge fan of second and third opinions for myself, just because I’m a bit lazy and already see enough doctors.

As to your specific questions, inflammation can impact your vision. If you have not already had a complete, dilated eye exam, I strongly encourage you to do so. This is something that should be done on a yearly basis. My eye doctor is part of my team of doctors, as is my podiatrist. The hand surgeon is my Best friend at times, and I have an OT and a PT that I use periodically.

For brain fog, this could be related to fatigue, which is certainly part of the big picture with an inflammatory disease.

Keep us up to date on your progress through this journey.


#11

Hi Stoney,
I have been to the optomologist, had to get the whole baseline testing to use hydroxycloriquine, which has a past track record of causing retinal detachment. She said that the blurred vision was not coming from the eyes, meaning it would probably be neurological. It did improve for a while with the anti malarial drug, but has returned with the fog. Brain fog is much worse then a fatigue induced type, this is totally forgetting people’s names, getting lost while out in a familiar area etc. my Rheumy was thinking it was more inflammation in the brain, this can be tested with a special imaging MRI, the inflammation causes a restriction in the blood flow to the vital centers in the brain, a common symptom in SLE Lupus.
I also have a good team of doctors now, I have had to fire a couple in the past. Rheumitolgist, Dermatologist, Optimologist, GP, Pain Management and Neurologist, and now a Ocologist, lots to keep track of…


#12

Glad to hear that you are so on top of things.




Jon_sparky said:

Hi Stoney,
I have been to the optomologist, had to get the whole baseline testing to use hydroxycloriquine, which has a past track record of causing retinal detachment. She said that the blurred vision was not coming from the eyes, meaning it would probably be neurological. It did improve for a while with the anti malarial drug, but has returned with the fog. Brain fog is much worse then a fatigue induced type, this is totally forgetting people’s names, getting lost while out in a familiar area etc. my Rheumy was thinking it was more inflammation in the brain, this can be tested with a special imaging MRI, the inflammation causes a restriction in the blood flow to the vital centers in the brain, a common symptom in SLE Lupus.

I also have a good team of doctors now, I have had to fire a couple in the past. Rheumitolgist, Dermatologist, Optimologist, GP, Pain Management and Neurologist, and now a Ocologist, lots to keep track of…

#13

sounds like they are on the right track. Usually neurological effects are the result of damage as mose commonly deteriotation Inflammarion ovvurs in the entheses and nerve sheath. No connective tissue is immune. As we speak I'm cooling my heels in the CCU with inflammation of the percardium. At lsast I hope thats what it is..... I'm sort of an uncooperative patient and have refused most of their brilliant ideas for treatment


#14

Jon_Sparky, I am really sorry about the trials you are going through. It’s miserable, and not unfamiliar to us here. All of this stuff (and especially multiple myeloma) is very scary, worrying, puzzling, and exasperating. You feed, look after, and dress that body well, and here it goes doing something that you can neither understand, nor control. Those around you rarely have an understanding of what you are going through, because, after all, you don’t look ill. Tell us about it!
The way to get the best and most helpful support here is to be open, and tell your fellow site-mates what’s up, as you have now done. People will reach out, as you are seeing. If you can share a little sympathy with your fellow sufferers, so much the better.
Like all of Ben’s Friends, we are volunteers here, and all the moderators on this site have more experience than we’d wish with most aspects of this disease. Some of us have busy careers and families, some are retired, some have disease that is under control while others continue to suffer the ravages of this affliction, some of us have joints that are just fine (for now anyway), while others have multiple joint replacements. We’re a mixed bag, and we’re no strangers to frustration and worry and grief and anger and pain. One of the ways that we find helps dealing with all of this is by supporting others through our work here.
From the sounds of it, you have good doctors who are doing their best for you. Not everyone we meet here is that lucky. I hope that you get some answers, and maybe a glimmer of relief soon. Meanwhile, hang out with us.


#15

Jon, that is a lot of worry and anxiety to be carrying around while your medical team pull together to try to get to the bottom of several issues for you. Just the waiting can drive us nuts when we're worried and in pain .... we all get that here. I know as well how frustrated I get because the answers aren't all in one place it's this doctor here, that radiologist there and so on .... sometimes I want to ask why they can't all get together in one room for just a few minutes and come up with one cohesive answer .... but life, and more specifically medicine, doesn't seem to be like that. Drives me nuts!

I hope this week moves things forward for you. Keep us posted and we are all here for you.


#16

Thanks for the support during this difficult time.
Jon


#17

Jon, thank you! We don’t do this work for the thanks, but when someone expresses gratitude, it does make us all feel better. I’ve had a horrendous weekend (which I will blog about later)and you managed to put a wee smile on my sad face. Thanks again for coming back and for your kind words.


#18

Early this morning, I got a notification that Jon_Sparky had “liked” a comment of mine. OK … but the subject line of the thread rang no bells for me, which is a bit odd. Curious, I clicked to see what the “like” referred to. And there it was: a “like” for something I’d said 773 days ago. Yes, more than two years ago! What a wonderful way to start the day! Who knew that a small electronic token of appreciation could mean so much!

Then I read the whole thread, and I realized how truly remarkable it was in its openness, its emotion, and (in places) the blunt honesty of its message.

Then I noticed that everyone on that thread is still with us, and active. How cool is that?

Thanks so much, Jon_Sparky, for that “like”. Isn’t it amazing what one little click of the mouse can do?


#19

Always. Just always.


#20

Aw Seenie, I hope you’re okay! :worried: