Feeling Terrible... Looking back... help?

I have felt terrible for a few days. My joints in my fingers and wrists hurt; it hurts to type.. My feet and one ankle hurts. I ache all over. I have cried all day! I called my Rheumy and told him that I feel terrible, he wants me to continue NSAIDS and give them longer to work. My abdomen is swollen and I feel like I have a kidney infection- right now this is the worst. I have been so sickly over the past 3 years, I wonder if most of it was PsA. I had pneumonia (x-rays so mild), but it took 2 months to clear up, kidney infection (antibiotics for 3 months), flu, asthma... My joints have just started to hurt really bad, before, I would just pass it off as getting old. I feel like I am on the right track to "getting the t-shirt", but I don't look forward to the painful wait. I am fearful that I have waited too long to see a Rheumy. What do they do if you go to the ER with this? Will someone teleport a competent doctor to my bedroom?

Hello there. You're going through hell by the sounds of it. Don't let fear get the better of you though. I suspect that a bit of sorting out is required and there are loads of us here who have been through similar experiences, we can put our heads together with you to try to help move things on.

Firstly, if I had a swollen abdomen and suspected a kidney infection I'd be on to my primary care doc ASAP. I am in the UK so perhaps there's another appropriate route e.g. ER for out-of-hours care but I think you should act on this straight away. I don't have any medical knowledge but I imagine kidney infections need prompt attention.

Please remind me .... do you now have a definite dx of PsA or is it still 'probable'? And have you been prescribed anything other than NSAIDs? Looking at a past post, it looks as if you have a rheumy appt. in about a week's time, is that the case? Because if so we can help you prepare.

I can understand you feeling like you're at the end of your tether. I'd be just the same. But I think you may have different things going on so need more than one plan of action! Tell us more .....

Thank you! I am completely floored by how fast my body is falling apart. A month ago it was mostly in my feet and hands. Over the past few days, it has gotten much worse. Overnight my palms flared up, my shoulder, wrists and knee joints have started hurting.

I spoke with the ARNP about my diagnosis. She told me that he is sure that it is either RA (my Aunt has this) or Psoriatic. She told me that there is a period of time, often 30 days, where he will try NSAIDS alone. I will see him in 2 weeks and it will be exactly 4 weeks since my GP started me on Mobic. My diagnosis at this point is PsA because my RF = 15.9 (abnormal but only slightly elevated), my CRP = 1.1 (also abnormal but only slightly elevated), my SED was normal. He also did a L CCP Cyclic Citrullinated Peptide Ab IgG and the results were normal. In the x-rays I had minimal MTP joint space narrowing , no osteophytes, and No significant calcaneal spur (This seems to indicate no Osteoarthritis and that I do not have a significant bone spur?) I am in the US and in order to bill insurance, they must have a Dx. It is possible for the Dx to change. My Rheumy told me that PsA is a "Clinical Dx" and that based on my skin. the swelling and tendon involvement he thinks it is PsA, but because of my family Hx and blood tests, he will continue to check for RA.

I am alarmed mostly about how fast this is progressing. Most of my worry takes place in my gut and it could be the reason for my abdominal problems. I am going to see my GP tomorrow if it is not better.

Another thing that could be factoring into this is that my Dad just passed away from cancer in July. I am scared to death of Chemo and the meds in general. My Aunt participated in a Clinical Trial for Ra and later was diagnosed with Alzheimer's Disease. I am scared to death of what is happening to me and what is to come....

I do not understand how things can meander along and then all of the sudden, I get slammed. I have "shooting" type pains in my wrist, dull ache type pain when I move my shoulder (and knees) now that was not there a week ago. Fatigue and tiredness are constant. The meds that I am on are doing NOTHING, except maybe making my stomach hurt!

Thank you so much for you reply!!!

I agree with Sybil. A swollen abdomen and possible kidney infection need to be checked out ASAP.

You are officially in the gap now, and it sounds as though you are having a really rough time of it. The only good news is that this should enable you to get started on a DMARD and/or a biologic sooner rather than later.

I know that I was also started on NSAIDs, for probably close to nine months before starting on my first Disease modifying med. it was pretty rough, and I have to admit that I probably should have pushed for more. When you see your rheumy advocate for aggressive treatment. In the meantime, warm baths may be helpful, I’ve worn compression gloves for my hands and it’s been helpful. You can also try out topical a like icy hot, or bio freeze and see if it offers you any relief.

Thank you! I had not thought about the compression gloves... oh, that sounds much better than the "hand wringing" that I am doing now. I have tried the warm baths, but it makes my psoriasis worse, so I have to be careful. I love biofreeze - especially the spray! I wonder if it they make a full body compression suit lined with bio-freeze? At this point I would buy it! Oh, my life sucks! I am going to have the kidneys checked out tomorrow, I feel too bad to go to the doctor!

Okay, so you're wisely going to get your swollen abdomen checked out pretty soon. I hope you can get some answers and / or reassurance on that score. Then off to the rheumy in a couple of weeks. Things are progressing! Hang onto that.

You mention 'chemo' and your fear of the meds in general. If it is Mtx that sounds like chemo to you then my understanding is that Mtx is used (maybe 'was' I don't know) for treating cancer and is a chemotherapy drug in that context. However the quantities in which it is prescribed for inflammatory arthritis are considerably lower, so low relatively speaking that the word chemotherapy does not apply. The possibly clumsy analogy I'd use is that aspirin, like so many drugs, is very tough on the body in large amounts but is used routinely for minor ailments in very small quantities in which it is so much safer.

Fear of the meds is very common. I'm sure many of us have been there. On this site our mantra is 'fear the disease, not the drugs' and I don't think we say that lightly. As you're experiencing, uncontrolled disease can be very unpleasant and it can cause harm in many ways. You should not be started on meds and then left to your own devices, you should be closely monitored. Any problems should therefore be picked up before harm occurs. I guess a lot of us come straight here if the meds do give us a few problems. But that means that such issues loom much larger than they are statistically speaking.

My own experience is that I felt like .... I think the American expression is 'a bag of dirt' before starting meds. I felt dreadful for years before PsA flared up. Since starting on meds (which have been mainly trouble free, though not 100%) I've rediscovered what it is like to feel and, indeed, look healthy. And that's without taking into account the impressive improvement in the joint disease.

My life sucked too. Not so much now, I'm a happy bunny most of the time though as I have PsA I reserve the right to whinge occasionally! I so hope you'll get out of that gap and that a few months from now things will be very different in a good way.

Stoney mentions advocating for aggressive treatment. A scary word. But one that means aggressive towards the disease. I guess she meant biologics and, in fact, they are smart drugs which can be highly effective in treating PsA and easier on the body than DMARDs.

Please keep talking to us and sharing your fears. And keep your sights firmly fixed on the fact that it does get a whole lot better than the often miserable 'gap' experience which you're enduring.

I can’t add much, really, to what has been said already. Listen to these ladies! They’ve done the course.

My small contribution: PsA is always a clinical diagnosis. There are no tests which give docs the “A-ha” moment. You might like the book that I recommend in Book Reviews, and it explains the diagnosis process and criteria really well. It also makes a case for the authors’ view that timely, aggressive therapy gives the best outcome. The e-book is a bargain, and you can get free software to read it on your computer if you don’t have a kindle.

A note on the RA-factor and x-ray thing. I have a slightly elevated RA factor, but negative on the anti-CCP test. My inflammation markers were only slightly off – ESR normal, CRP slightly high but nothing that couldn’t be attributed to my needing to lose weight. My PsA diagnosis was entirely done on clinal symptoms – nail dystrophy, fatigue, joint swelling, skin issues and a helluva lot of damage. (Don’t make me list it … if you want to know, read my profile.) At one point, there was a question about whether I had RA or PsA. The deciding factor was one little bone spur-like thing on one foot foot bone. That one little sticky-out thing was, apparently, unique to PsA. And that clinched the diagnosis. PsA is a slippery fish to catch. It sounds, though, like your rheum is on the right track.

I’m sorry that you are feelng so awful, but it comes with the “gap” territory. PsA, though, does not make you immune from other diseases, so make sure you get the possible kidney thing checked out asap. The ER can deal with that. Unfortunately, the for the symptoms of PsA – joint swelling, pain, stiffness etc – the ER will offer you nothing.

Hang in there, and hang out here.

Oh, thank you so much. It is awesome that you guys understand! I am not just a hypochondriac! I am printing this and re-reading and will post in a bit. Thank you!

Aha, the 'I Am Not a Hypochondriac' moment! I like it!

LRoland said:

Oh, thank you so much. It is awesome that you guys understand! I am not just a hypochondriac! I am printing this and re-reading and will post in a bit. Thank you!

YES! You are not a hypochondriac nutbar!

I went to a PsA research clinic for a second opinion because my then-rheumatologist said my disease was mild, and did not warrant a biologic. I was terrified that it wasn't mild and that my feet would be severely damaged. My family doc kept telling me that my biggest problem was that I worried too much. See? I was an obsessive-compulsive hypochondriac!

Anyway, I was scared rigid of going to that clinic. What was I afraid of? I was afraid that they would say "We don't know what you have, but it's not PsA." or maybe "Ya, you probably have a bit of PsA going on, but would you like a referral to the Psych clinic?"

What did they, in fact say? "You have severe, longstanding PsA and a lot of damage. The only thing we can do is give you a biologic and hope that the damage is arrested."

I went into uncontrollable sobs. Oh, I wasn't upset about the diagnosis -- that was the best news I had had for a very long time. They were sobs of relief that I wasn't a crazy hypochondriac after all.