Feel like a stranger to myself with this disease, please help

Welcome Greetings and Introductions
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Hi all
I really hope my first post here isn’t too depressing. I feel at the end of my tether with everything right now.
I’m Lucy, I live in northern England, UK, and am 46. I was first diagnosed with a reactive arthritis in 2013 which was a massive flare (hospitalised for a month at first) and took a year to get over. But I did get into remission and was told it was a one off incident. I’ve been battling one thing after another since then - I had a hysterectomy, and it was discovered I had a congenital heart defect so in December 2016 I had open heart surgery.

A few months later in April 2017, during recovery, I started with massively inflamed knee, jaw and feet again, but this time it was also in my hands. It came on very quickly and intensely. The doctor noticed the psoriasis on my hands (only mild, I am lucky) and I was diagnosed with PsA.

The only thing in common with this and the last major flare is that I was very anaemic when it started.

Anyway - I’ve been on steroids since April 2017, injections at first then oral tablets since September. I did 16 weeks of methotrexate, which I think was starting to help modify the disease but I had awful side effects of vertigo and sickness, even with injections so was taken off it.

I then started with terrible acid reflux and swallowing problems - which got so bad that I couldn’t swallow my medications so was brought into hospital a month ago and started on loads of meds for it. Apparently it is because of the oral steroids.

To try to get me off steroids, I was started on Benepali (a biosimilar to Enbrel that is cheaper). The rheumy doctor counted 19 inflamed swollen joints. I’ve had 3 doses (weekly injections) but was not allowed it this week as I have an outbreak of coldsores (fever sores) and mouth ulcers.

I am having a camera into my gullet and tummy on 17th Feb to see what is going on. In the mean time, since this flare up started 10 months ago I have gained 35lbs in weight, lost my job, feel isolated from my usual activities (church and gym) because of fear of catching viruses etc. My confidence is at rock bottom.

On a positive note - I met a wonderful man, and we are getting married in May! And I’ve started a Masters degree.

I did a course in the summer to qualify as an aerobics instructor but was unable to finish it.

I feel so down, even though I have a lot to be happy about. I am sick of being unwell. I hate that it is dominating my life and affecting my mental health. I am trying to cover it up and not tell anyone how I am doing but I don’t know how much longer I can go on like this.

I am sorry for the rant. I don’t know where else to turn.

Thank you all so much.

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This is a great place to turn, Lucy, and we’re glad that you’ve joined us. Most of us here know the worn-out, ground-down pain (physical and emotional) of this disease. (Have a read of Rob3’s thread? You should, if you haven’t already.) No need to cover it up here: we get it. But yes, then there’s the rest of the world, isn’t there?

It sounds as if your rheumatologist has things well in hand, but in case things don’t go the way you hope, are you aware of your options for going to one of the NHS centres of excellence? Our UK mod, Sybil, will gladly fill you in, I’m sure.

Hang in there, Lucy, and hang out here. And don’t apologize for moaning. (Yet, anyway ! LOL)

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Damn that’s a lot to deal with! I totally get being overwhelmed by it all! I really hope you’ll get this under control asap!

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Thank you so much for your reply. It feels good to know I am not the only one, but on the other hand I am sorry that there are so many of us suffering like this.

I will read Bob’s thread, and get in touch with Sybil. I think I may already go to a centre of excellence though. I go to a specialist hospital in Leeds called Chapel Allerton Hospital.

I’ve never been involved in any forums before - thank you for making me so welcome.

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Thank you Cynthia. I really appreciate your support. You are right. I do feel overwhelmed by it all, I;d not thought of it like that before, but it is like I need a big rest to catch up and process everything that has happened to my body.

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Bingo! You’re already at one of the centres of excellence. Good for you!

Something unrelated, but funny (I think…) I was trying to make out your avatar. I looked and I looked, but simply could not see what was kipper-like about it. And then I realized what the picture was of. :stuck_out_tongue_winking_eye:

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Hi KipperFace, and welcome!

I agree with Cynthia–that is so much you’ve had to deal with. Let’s all hope you can get right back on the Benepali injections and they help. I had never heard of Benepali–it’s nice to know there are cheaper alternatives similar to Enbrel.

Hang in there–you sound like a very positive person and you will get through this and be able to enjoy those things you have to be happy about…for now, don’t feel bad at all coming here and letting it all out. We all care!

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Hi Kipperface,

You’re certainly not alone as you can see. And I’m glad you’re at the right place to go for treatment. I’m in the UK too, live in Kent but get treated at Bath, thank goodness.It at least makes me feel safer and cared for.

It does though appear to take time to get ontop of this disease. And along the way the going can get so very tough. People on here so get that and that really helps. So much. So just know we’re all here.

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Kipperface, first, you are welcome :blush:

Nobody’s story is exactly the same, but most here are pretty familiar with much of it. I completely understand the feeling that you need to cover it up and show other people you feel ok - even that marvelous man! (Congratulations :grinning:).

But you don’t need to do that here. It’s a great place with lots of practical tips and advice, but one of the things that often astonishes me - in a good way (after witnessing some personal skirmish on Facebook or other forums I read, but admit I’m not involved in) is the sheer level of acceptance and support here.

So know you have that, as a start.

As a totally odd aside, I’ve always thought that someone who actually had an inflammatory arthritis, to formulate a warm-water aerobics class (ok, maybe more like warm-water tai chi), could really change peoples lives - whilst making a living. I’m not suggesting that the time for you to do this is now, but things will get better, and when they do, know that your dreams are not gone, they just might be a little different :blush:

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Hello there!

It’s great that you’re at Chapel Allerton. As far as I know, that hospital and the Royal National Hospital for Rheumatic Diseases in Bath are the two main centres of excellence for PsA.

It sounds as if you’ve had a good treatment plan so far. Obviously things have been far from straightforward, but at least you’re getting appropriate and proactive care.

I always think things will get better. It’s not a very elaborate philosophy, but it works for me. You are relatively young, you have a good rheumy, you are in the process of addressing a fair few issues. And you’re getting married! That’s so exciting - congratulations! Anyway, my in-depth assessment of the situation would be ‘it’ll be okay, more than okay, in time’.

I guess anyone who is doing a masters degree and has trained to teach aerobics is quite likely to resist the need to rest, mentally or physically. And it is hardly surprising that you feel down. One step at a time eh? Would counselling help do you think? I think you’ve already nailed it:

Please allow yourself that time. So glad you’ve joined us.

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Hi there Kipper Face! I’m in the north east of England too so probably not too far from you, although I’m nearer to Scotland being a Northumbrian! I’m fairly recently diagnosed with PsA - last August 2017 - although it seems I’ve had it for a few years without knowing. The big flare in June 2017 in my right hand and wrist started my whole PsA journey off, and at times as it spread to many other areas of my body I felt desperate. Once I got to see a Consultant at the Freeman Hospital in Newcastle things started to improve immensely. Steroid injections kept me relatively comfortable whilst Methotrexate got to work. It took a while but the difference was amazing. Then I had to stop it because of a chest infection and it never worked the same after that. Sulfasalazine wasn’t an option it was discovered and I’m now being screened to go on a clinical trial of two biologics that hopefully I’ll be suitable for. It’s a terrible disease and I thought my life had been taken away - my hands and wrists are the worst affected and I’m an artist and writer! But Methotrexate worked quite well for me for a while. The main thing is, there’s lots that can be done to help, so don’t despair. X💖

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**Hi Kipper Face! Welcome!
As everyone else said before me, no filters needed here. I, too, have never been a “forum type” and the first one I joined left a horrible taste in my mouth. But this group is superb! We are understanding, compassionate and sincere – truly a blessing.
While I don’t like to read about anyone suffering from this disease, it helps to see you are not alone in the struggle. I also have uncontrolled PsA. For two years (next month) I have been living with this stuff. I have done the steroid/MXT, Sulfasalizine, Humira, Symponi, Enbrel, and now two weeks ago started Cosyntex (300 mg) and MXT (15mg). The pain in my feet, neck, hands, lower back, is terrible! And the weight gain! Ugh! My rheumy is awful, but I live in Hawaii and being on an island, well, the choices are slim pickings. BUT I have a wonderful primary care doctor who is helping find the best ways to stay comfortable until we find something that works. I have a supportive family (although they are scattered over the world), and I live in a tropical paradise. Trying to find the good in all this… My patience has never been tested so hard. I am not trying to make this about me, I just want to demonstrate you are not alone. We are here to support each other in any way we can. It really is one day at a time. One doctor visit at a time. It will get better.
Congrats on your marriage and education pursuit!! Wish I had the miracle potion to make you better, but hang in there. We can do this!:muscle:t5: **

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Hi Lucy, welcome to the forum!
I can’t really add anything to the excellent advice and support of the others, except don’t forget to address your mental health in whatever way works for you. That might be talking therapies, mindfulness (there are some great apps about), exercise within your limits for the endorphins (I swim and walk a bit), gin/prosecco, time with friends, medication or more gin!
There is hope… :heart_decoration:

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Thank you ever so much for sharing. Knowing others are going through similar feelings and frustrations makes the experience somehow less alienating. Our symptoms are often not perceivable by others, who suspect attempts at psychological manipulations to obtain attention or the avoidance of work or exercise, Having gone through stage iv cancer years ago, I found great solace at the time and now once again by a thought I had had since childhood: the hypothetical question: if I only had x more months to live, how would I spend my time? The classic philosophical thought par excellence had and has a special effect - live if possible (if medications help) spending time doing what you most wanted to do - seeing that particular person, reading that particular book etc. Another thought if possible rest a little if you have the opportunity. A collective embrace to all .

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