A few questions from someone wondering about PsA

[jdcatt]

Hello all I've just recently joined so I'm brand new here. I am a married mother of three living in Indiana. I found this discussion forum while I was scouring the internet looking for information on different types of arthritis. I've been suspecting that I have some kind of arthritis for about 5 months now.

What led me to researching further into Psoriatic Arthritis is that I have a toenail that looks suspiciously like Onycholysis and what appears to be pitting on that toe as well as several other toes. I noticed the suspected Onycholysis about a year ago and thought maybe it was a fungal infection but never had it checked out because there was no discomfort such as burning/itching or anything. My finger nails are fine.

I've had discomfort in my left foot, left wrist, a few fingers, both shoulders and one side of my jaw that comes and goes. My pointer finger on my right hand swelled back in January but it's almost gone now. Until recently the pain has been completely tolerable so that makes me doubtful that it may be arthritis. From what I've read Psoriatic arthritis is quite painful. Most recently I've begun to have pain at the base of my skull and upper neck that gets quite bad at night and wakes me over and over again so I'm not getting much sleep. And my little toe acts up enough to wake me also. It feels broken and gets very painful.

That is something that I just can't wrap my mind around. How can something on my body become that painful then just stop hurting like it never happened? It makes no sense.

In June I came down with a bad case of Iritis/Episcleritis and my ophthalmologist told me that it was a form of arthritis and that he thought I am a Rheumatologic case. He didn't know about the joint pain I've had so I was really surprised by his words because I had been suspecting arthritis before the Iritis came on.

I've never had any kind of skin rash until the end of June just after the Iritis. I'm highly doubtful that it's psoriasis though because there is no crusting or itching. It just looks like blotchy red patches of skin on the hairline on the side of my face.

I have an appointment with a Rheumatologist in two days to get checked out. In the mean time I'd like to ask about the beginning of psoriasis and psoriatic arthritis.

When psoriasis first starts can it look like what I described? Just painless red patches? And what about the pain of the arthritis? Can it start off in a mild form? Is the pain of the arthritis always as horrific as what I've heard? I'm worried that I won't be taken seriously when I say the pain is not to bad, except in my neck and little toe, but I know there is something not "right" with me.

I've also had a few episodes of fatigue over the past year that I can only describe as disturbing. It disturbed me to the point of tears. I absolutely couldn't handle being that tired and trying to work my way through it. I'm dreading that coming back.

Well, thank you for reading and I would appreciate any feedback on what it's like in the beginning of psoriasis and psoriatic arthritis. Very much so. I'm a bit anxious and wanting to learn all I can.

[jdcatt]

I'd like to clarify something. What I meant by not being taken seriously is that I am worried that if I tell the Rheumy the pain is tolerable then I will automatically be dismissed as far as having arthritis goes.

[Audrey]

Sometimes having PA you have more of the arthritis than the psoriasis. I certainly don't fit the psoriasis mould. I only have 2 very small patches on my skin and the rest is in my nails. However the arthritis I have can be pretty debilitating. As Pa can flare I can have times where it is tolerable and other times where I don't know what to do with myself. I think I have been very lucky in that both my rheumy and my GP are fantastic, but one thing I have learnt is to take each day as it comes and ask your rheumy about your concerns. Theres no telling what each day will bring- some people barely suffer while others really do, and no one can tell how quickly the disease can progress. Just make sure you are honest about any concerns etc and always come and talk to people on here- I spent the first six months in denial and feeling alone. Now I've found the support on here it helps so much. Good luck and thinking of you xxx

[Kelpie]

Hi jdcatt,
I'm fairly new to the forum as well.
I have pa which came on slowly over a period of years and started with persistent achilles tendonitis which was my only symptom for a couple of years. I had lots of physio, rest, exercises, ice packs etc and it still never cleared so I was referred to rheumatology where I  had a couple of steroid injections which eased the tendonitis slightly. Over time I developed problems with my wrist on the same side and was eventually confirmed as having pa. I don't have any psoriasis although I have recently had some irritation on my scalp which might prove to be psoriasis. It has now been about 10 years since it all started and I now have problems with a lot of muscle aches and pains, plantar fasciitis in both of my feet, joint pains with my fingers and toes and both wrists and knees. The pain varies from not to bad to not to good. I am on two DMARDs(sulfasalazine and methotrexate) and regular diclofenac and also paracetamol as required.  I also have had iritis twice, its unpleasant! I also have had periods of intense fatigue but thankfully that is something that the DMARDS have helped with.
Hope this helps, everyone is different and their disease follows it's own path. There is no right or wrong way to have PA.
Good luck with your appointment, I hope you get some answers and support.
 

[jdcatt]

Thank you for your reply Audry. I've been reading here for a few days now and have noticed the pain levels mentioned by most of the members with the arthritis seem to be much worse than what I experience. I do wonder if I am in the beginning stages.

I'm hoping this rheumy I'll be seeing is good and is open to discussing and explaining things.

Taking things one day at a time is excellent advice that is very hard to remember sometimes. I'm the kind whose mind doesn't stop when there is something on it.

[jdcatt]

Hi Kelpie. Thank you for sharing how it was for you in the beginning. It's interesting that you mention muscle pain, that has been an issue for me for about 18 months. I began having lots of muscle pain before any joint pain. The muscle pain was accompanied by pins and needles and electric type shocks in my legs/feet and arms/hands. At the same time vertigo set in. I began seeing a neurologist for all of this a year ago this month thinking it was a spinal cord/nerve issue but I've have had several tests including an EMG and two MRI's and visits with ENT's, neurosurgeons and an audiologist trying to figure out the cause. Oh and tons of blood work but everything came back fine. I can't help but wonder if it's all related.

Yes, the iritis is unpleasant! I'm hoping that doesn't come back. My eye swelled from the brow bone down to the upper cheek bone and my eyeball itself swelled with edema to the point I could not close my eye lids over it. And it hurt!  I've read that iritis doesn't hurt but I can vouch otherwise! But I responded really well to the steroid treatment and the dilating drops.

Thank you for the good luck wishes I can use them!

[flower fairy]

At the beginning mine was nearly all muscle pain, muscle weakness, especially in legs and a foot and left sided chest pain that never went away following pneumonia. I too had gone to a neurologist privatley to have multiple sclerosis ruled out because it is in my family and when bloods were coming out fine my local hospital did not want to see me again and told me I had a virus and to get on with it but I desperatley knew something had gone totally wrong(didnt know the minor skin problem I had was psoriasis at the time) and had to set about figuring it out myself with GP's help. Unfortunatly my livlihood went under (self employed in childcare) and my savings went paying for tests to rule things in or out and although doing better now on treatment it still gets me down when I think of the way I was treated in the beginning by my local hospital and hold them responsible for the financial mess my life is in for the foreseeable future.
              As for pain, everyone's expierience of pain is different, mine has been mostly dull throbbing that keeps you from getting to sleep because you have to keep shifting position and tendon pain which pinches everytime you flex or stretch the particular tendon, any of them on their own for a week or two would be tolerable but the whole lot togather going on for weeks is what makes it so difficult.

[moanalot]

Hi from me and welcome. I had chicken pox aged 45'ish which knocked me off my work for 12mnths. I then developed pain in my feet in the mornings which was like walking on glass. I now have PA in most of my joints and a P on my scalp, hands and facial areas. The P is mild by comparison to the PA. The pain for me is on a scale of 8-9/10. Its so bad that I am now on morphine patches as well as liquid morphine. My pain appears in various joints with no pattern as such. It can start in my feet, then move to my knees, then hands, then feet etc. Some days its appears in multiple joints.
The pain makes me moody, irritable, depressed etc etc. It sucks me dry physically, mentally and emotionally. There is no let up of the pain, its always there for me.

[Scampi]

I usually only have discomfort rather than pain (though even that can get a bit wearing when it's always there, in several places), but my GP, rheumatologist and rheumatology nurse have always taken my condition seriously - they seem keen to make sure it doesn't get worse.  I hope you find the same level of care.

[jdcatt]

Thank you flower fairy, moanalot and Scampi for replying. Your replies are proof I guess that pain levels can vary greatly from person to person. And flower fairy I too was being checked out for MS but brain and spinal MRI's showed no lesions.

I had my appointment with the Rheumatologist today. She seemed like a nice person but didn't seem to be to worried about anything I told her. I have no swelling or tenderness and she just glanced at my toes when I mentioned them. She brushed off the irits/epislceritis as "just inflammation" and didn't seem to think there was much of a connection. I will be tested for HLA-B27 but that's about it. She offered to do x-rays on my hands because that is where I had pain this week. Yes, she really only asked about any pain I've had just this week. I was able to squeeze in comments about pain from before a week ago but not much. She did say my symptoms seem very vague and I should try nsaids for any pain.

She did mention that nail pitting only looks like pin holes and mine doesn't so it's not nail pitting, and that it's usually only on the finger nails. I didn't know that. Is that correct? Mine look more like longish indented grooves. Like someone took some kind of tool and carved on my toenails.

So I guess I'll wait to see if I'm positive for B27. I don't know what if anything it will mean if I am positive. Then I guess I'll wait and see if things begin to get worse.

Thank you again for the replies!