I’m new to this group and this is my first post. My GP has diagnosed PsA. I am waiting for an appt with rheumatology dept. was supposed to be 18th oct but now put back until 18th Nov. I have widespread pain. Left toes/ball of foot. Both knees, hips but right hip worse, left wrist, right shoulder and ribs. I have been battling for 4 years + for someone to help. I’m 43 and really fed up with pain. It’s affecting my life. I work full time and cope with that but I have no social life… any suggestions as to how to make life better would be very much appreciated
Hi there @Freyza131 and welcome! I’m glad that you’re reaching out so early. We’ve got some wonderful people in Great Britain who can help you with some of the logistics of the system there.
Sad to say, your story of having dealt with this for at least a few years isn’t uncommon. I’m one of the lucky few, that when things got suddenly worse, I got a pretty fast diagnosis. The advantage to diagnosis, as I’m sure you’re already aware, is that it means that you will start meds that will help you start feeling better.
One of the big things that we say here is to fear the disease, not the meds. While the first med that you take may or may not be a miracle worker, the risks of the disease outweigh the risk of the meds for the vast majority of people. One thing to realize is that the site is searchable, so if you are looking for information about a specific medication, or specific joint problem, you can search for it.
Glad to have you join us!
Good morning @Freyza131 & welcome!
Yours is a familiar story but one that often changes for the better with diagnosis and treatment. I’m in the UK too. Long undiagnosed PsA put me out of action pretty much completely 8 years ago. Despite an aversion to ‘pill-popping’, I worked out that I had some sort of inflammatory arthritis and that there were new-ish and very effective treatments. That’s what I set my sights on and, indeed, the treatment has delivered.
If you have PsA I think you’re doing rather well. (Time for you to shout at the screen!). You’re doing what you have to do. What can I say … PsA needs diagnosing, there’s almost always too long a wait but your appointment is on the horizon. If it’s PsA you should start treatment promptly in November. Oh, it’s not enough I know, you’re suffering now.
I’m just saying look to the future, please believe that things can get better, they will get better. Sleep helps loads, good food and gentle, regular exercise truly help … these things are essentially part of the treatment plan. Do all that sensible stuff as much as is possible. Look out for what helps and what doesn’t - you’re on a learning curve.
This site is good for support & it’s also really educative. Using the (magnifying glass symbol) search function at the top of the page is useful for checking things out. Ask us questions … have a moan … whatever helps at the time.
Welcome to a wonderful resource filled with real people who have a combined wealth of experience and knowledge of this disease. I joined around February 2019 and have gleaned far more than the medical system has ever provided. I would encourage you that at every stage you might be at, hope and optimism are very important. We all process PsA in different ways and the person who is at the “worst” may not be how you will end up. You will read of experiences from both ends of the scale and everything in between Rheumatologists are a necessary part of your on going maintenance…be patient with the one you will have and let them know early that you want to know everything that they know about how you are. Without asking, I have found that they easily assume, “The patient won’t understand medical terms”. This site is FULL of information and links to more information. My current Rheumatologist is afraid of patients who are well informed…it challenges her securities. But she is very new at her profession and I think has my best interests at hand.
Others here might know better and can correct me but I would suggest that you start taking Folic Acid. Probably all of us have been or are on it. It is highly likely that you will start on Methotrexate and Folic Acid is always prescribed with it. Wouldn’t hurt to get it going early but check with your GP. I’ve been on Methotrexate for 6 months…I would estimate that I’m 50% better than before taking it and likely the 20 mg has reached the peak of its effectiveness. Last week I had ultrasound on my hands, wrists and feet. The technician wouldn’t tell me much (they are sworn to secrecy until the doctor gets the report) but she did say, “What I’m seeing sure confirms PsA”.
I hate taking medication of any sort. It took a full month to start myself on the MTX, I stared at the prescription everyday and was so afraid of the potential symptoms…but as the good advice has already stated “fear the disease not the POTENTIAL side effects.) (I’m a 59 year old male and haven’t lost any hair as of yet nor have I had any noticeable side effects from it.)
Lastly, because you are still working, you need more rest than you might think. As you are able, use the muscles and joints that don’t typically get used at work. Everything needs to move or greater stiffness and pain sets in. Welcome here!
@Freyza131, how’s things? Itching to hear what you think of our responses, whether there are questions left unanswered and to know whether you’re travelling hopefully or in the slough of despond! Don’t suffer alone.
Thank you to you for your responses and positivity. I’m feeling a bit better today. At the weekend and Monday I was particularly low. I felt like I had the flu with the aching body (but no other symptoms). That’s what prompted me to join and comment. It’s so difficult to know whether it’s all part of the same thing.
Glad you’re feeling a bit better.
Seems to me that almost everyone with PsA mentions feeling like they have the 'flu at some point or another - soon as I see that word I think ‘aha!’. I’ve started calling that yucky, low, disconnected, exhausted, 'flu-ey feeling ‘malaise’. Which makes me sound a bit Victorian but imo fits the bill!
Welcome. What you wrote is like deja vu. Your story could be mine. It is so hard waiting for the rheumatology appointment. Before I got my diagnosis, I self-treated with NSAIDs mainly Aleve and Epsom salt soaks to ease the aching. As mentioned previously, a good diet and light exercise are extremely helpful. I noticed a difference when I cut out sugar, most dairy, gluten and processed foods. Good luck on your PsA journey.
Thanks message. I understand the diet and exercise. Whilst I can do the diet bit, the exercise bit is a bit difficult. I because of the foot pain, even walking is a challenge at the moment. Swimming would be great if it didn’t aggravate the skin. Have any of you had the foot pain? It’s in my middle toe and the one between that and the big toe. Together with the ball of the foot in from those toes. If so what did you do to exercise?
With very stiff and swollen joints, exercise needs to be approached cautiously I think - and professional physio advice is required.
But pain alone … you may be able to ‘walk it off’, with appropriately supportive shoes. PsA pain very often improves with exercise. I find that fairly severe foot pain worsens at first when I’m walking, then improves or even disappears. Sounds like you need a podiatry referral when you see the rheumy. If some pain does get better when you move around, that’s a key thing to tell the rheumy too so now is a good time to experiment.
Hi there and welcome,
I’m in the UK too. Foot pain - ice and heat helps, ice for 5 mins, heat for 5 mins and repeat for around 20 to 25 minutes. It’s a natural anti-inflammatory process. As @Sybil said exercise (gentle) does help. Epsom bath salts helps too, either a full blown bath or just a foot bath. And freeze a small bottle of water and then roll your foot on it - that helps the ball of your foot too. Have a think about your shoes as well, sketchers memory foam ones works for loads of people (not me) or work crocs (very much me - I live in them) helps too.
And it would do no harm to badger (politely) your hospital for an earlier appt as in ring up and see if you can get a cancellation appt or get on a cancellation list. It’s bad form to push you back a month for your first appt. I’m delighted though your GP is on it. He or she could prescribe some anti-inflammatories, and/or better pain relief or even steroids if you’re really struggling. However walking into your first rheumy appt on steroids isn’t a great idea as they mask your symptoms very much and consequently there’s nothing to show your rheumy.
Hope this helps.
You will find plenty of good and positive help here. It helped me to hear others talk about it so I didn’t think I was the only one…
Toss your questions out here and someone will answer them,
Welcome to the group! You will find this a supportive and caring community.
So sorry about your diagnosis. Once you’re on the right meds you should be feeling better. However, with that said, I’m searching for a counselor to help me cope with this disease and I take antidepressant - a lot of us do.
If you’re struggling with fatigue, there’s a great article on how to talk to your doctor about fatigue that I can send you. An angel on this site posted it for me quite a while ago and it got me stimulant drug that helps me get through the day.
I hope you visit this site often and seek advice/support when you need. We are all here to help!
Well I had my hospital appointment. Was moved forward to 14th oct. doc said everything points to PsA but couldn’t give a definite diagnosis without blood test results. They are referring me for insoles to be made. Gave me a cortisone injection in my shoulder there and then. Said I need one in my wrist but that needs to be guided under ultrasound and also need one in my hip. But could only do hip or shoulder whilst I was there so I chose shoulder as that has been worse for longer.
I had my blood test results today which showed raised CRP and ESR. Also raised rheumatoid factors.
Don’t go back to the hospital until 13th January to see consultant. Fingers crossed they can decide on treatment x
Hey, well done - that’s real progress!
I think they will decide on treatment without too much trouble. As you may know, positive rheumatoid factor is fairly common in the healthy population as well as those with Rheumatoid Arthritis and other conditions, so this may not affect a dx of PsA. And anyway, treatment is pretty similar for RA and PsA.
I hope the steroid injection eases your shoulder quickly, it should do. Can you get the guided ultrasound in other joints before January?
Sorry you’ve got this thing, that goes without saying I hope. But with a bit of luck some really positive changes will date from this point.
Given those blood test results I’d be asking the hospital to see you now to discuss treatment. I certainly wouldn’t be waiting until 13 January to be seen. Phone them up and say the above. What on earth is the point of waiting around? There’s just none. Best of luck. x
Welcome! A diagnosis, while horrific, is also wonderful in the sense it allows for medication and therefore slowing progression As well as stopping the pain. It made the difference between walking and not walking in my case, using anti inflammatory autoimmune diet to enhance wellbeing. The network provided by this group has been essential for my health and psychological wellbeing. Looking up posts is illuminating and at the same time makes me feel amongst friends who know exactly what i’m going through -could not go without it- all the best
I start a new job a week on Monday and think getting time of work before January will be a bit difficult. I’m just battling on a keeping up with as much stuff as I can. I have not had an appointment though from the rheumatoid chiropodist which is also in January. Hoping it will be new year…new me!
Well do this instead then, phone your rheumy nurse and read off the scores of your blood test and ask does this mean you still have to wait till January before any medication is prescribed.
The thing is all the meds they are permitted to start you on initially take 3 to 6 to 9 months to get going. So hanging about till January just to be told you need meds then (when possibly you do now) just puts back the ‘new you’ by an unnecessary time period. And won’t help with the new job either.
It would be nice to think your rheumy depart has your best interests at heart, but actually making you wait for 3 months after blood tests merely shows they’re running an over stressed department and are struggling to hit the treatment protocols for all the different types of inflammatory arthritis patients are presenting with.
Many types of inflammatory arthritis like PsA (and RA given your rheumatoid factor possible results) can progress quickly to do irreversible damage to joints. The meds slow down that damage occuring stuff and indeed try not to make any more damage happen. But nothing can do that unless you get on the meds. Even if pain eases that doesn’t mean damage can’t happen.
So at least give the department a call. x