New to the group - Severe pain

ameliagore123

Hello everyone,

I was diagnosed with psoriatic arthritis just before Christmas after suffering before that for the last year and not knowing was was causing all my pain. I was seeing a orthopaedic consultant who was treating my severe shoulder joint pain in both shoulders as a long term injury with steroid injections to the joints but it made no difference and if anything made the flare ups even worse.

He then referred me to a arthritis consultant before Christmas who confirmed what was wrong with me.

I was prescribed methotrexate and he keeps on upping the dose so I’m on the highest dose. I also take folic every day apart from the methotrexate day.

I have been really really struggling with the pain and not sure how long I can go on. I have three small children ages 3,6 & 8 my husband has been amazing & is supporting me the best he can but it’s so tough.

I have ordered wrist, elbow support & a sling tonight as I can’t use my right arm the pain is in my neck, right shoulder, Elbow, wrist & hand. It is also on & off in my right hip, right knee & ankle.

I have emailed the consultants secretary now twice for better pain relief until it’s managed but so far they have prescribed steroid tablets but I know that this so far has not worked for me nor codeine.

I would be very grateful for any advice or suggestions please as I’m feeling very lost & fed up.

Thank you!

Tom

Welcome to the Community, @ameliagore123 .

I see that you have been told that you have Psoriatic Arthritis after a year of unhelpful treatment. It may be difficult ot see, but there are now some positives: You know what you are facing and have the support of your husband. Here is a link to our website, where you will find the story of Jamie Birch who also has the condition:

https://www.versusarthritis.org/news/2020/january/adjusting-to-life-with-psoriatic-arthritis-has-been-a-journey/

And here is some general information:

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

https://www.versusarthritis.org/news/2020/may/meditation-and-mindfulness-and-how-it-might-help-you/

Good luck and let us know how you get on.

Tom, Moderator.

janiebin

Hi there @ameliagore123 ,

You have found a great community to share your pain and frustration. We are all affected by arthritis in some way and being able to vent our angst to others who are on the same journey is a great comfort. The community are here to support you and share information and our experiences which we hope might be some help to you.

Life with little ones is hectic and exhausting at the best of times but struggling with painful shoulders and joints is an additional burden to carry. Have you talked to your GP about other pain relief, or maybe ask to be referred to a pain clinic if there is one in your area.

The other thought I had was trying a hydrotherapy session. Gentle exercise supported in the water provides great relief to all joints and the guidance of a trained physiotherapist can be really useful. It might help to have different exercises you can do both in and out the water. We make a fun time to music with the children knowing that it is not a rough and tumble session that could hurt mummy but a time for everyone to work through a series of exercise challenges that will benefit us all.

Do let us know how you get on,

Janiebin

Brynmor

Hi @ameliagore123

On a practical note, you might try easing the painful neck (and perhaps other spots) by using heat pads. We recently tried a neck pad that is heated in the microwave for a brief time and gives off gentle warmth which did indeed provide some relief. A not-too-hot water bottle wrapped in a towel would also work.

Some people prefer cold and wrap frozen veg in a towel. Give it a try to see if it works when the pain is too much.

jamieA

Hi @ameliagore123

Has your consultant not prescribed a non-steroidal anti-inflammatory drug (NSAID) to go along with your other medication? I was initially put onto Naproxen along with Co-codamol when first treated with sulfasalazine/methotrexate for my PsA. It was then changed to Etodolac NSAID and Dihydrocodeine with Paracetamol for pain when the initial drugs didn't work. I've also had a large number of steroid injections and a couple had no effect but the ones that did work gave me 4-6 weeks relief. It might be a good idea to ask for a referral to a pain clinic by either your GP or rheumatologist - I got some good advice from there. I was also given access to rheumatology physiotherapists for joint exercises and occupational therapists who suggested things like hand supports, compression gloves and kitchen aids. I was also given access to a 12 week course of online one-to-one rheumatology physiotherapy that I found invaluable.

Hope you can find some relief from your condition soon.