Difficulties with pain management.

Hello, I have recently started a course of anti-TNFs (biologicals) but am really struggling to balance my pain management with wellbeing management without the reliance on medicines; steroids or strong painkillers.

Everyday tasks are very difficult, if not impossible, for me to do without aid or support from other external factors. I, of course, am very happy about finally trialling a medicine that will hopefully help the inflammation and chronic pain I am in, but I am very worried and anxious about building myself back up as I know it will be entirely on my own volition (I have little to no muscles now and they are all stiff; very painful). I do not really not really know why this daunts me so much, but being young and having such a condition makes me feel like I will always be at the bottom my whole life, even with support in place.

I just wanted to get other perspectives into living life with conditions like chronic pain illnesses and advice for ways to do so (ie. I am trying to do minimal stretches to help my muscles/joints). Thank you.

Comments

  • Loggiemod
    Loggiemod Member Posts: 210

    Hi @EagerEarnie18 have you had a look at the Versus Arthritis stretching exercises?

    Keep posting - I ma sure there are others out there who have been through similar and can help you get through this. We are all friends together here.

  • Just thought I’d do an update.

    Doing so much better now, the biologicals have really impacted me; so much less swelling and pain as a result.

    My mental health is still, unfortunately, unbalanced but better than it has been in the past.

    thank you for reading.

  • @EagerEarnie18 I to have recently started biologics, I feel they help but still early days ( had 6 injections). I'm realising I feel tierd for 2 days post injection so managing that is a new thing .

    I still struggling to mobile even with painkillers, I can manage in the home well now but walking for distances is a struggling .

    Being any age with this condition is hard. But being young and having your whole life destroyed is a massive thing to accept and cope with. I just don't think people understand.

    May I ask your age and what kind of arthritis you have.

  • jamieA
    jamieA Member Posts: 659

    Hi @EagerEarnie18

    By the sound of it I'm at the other end of the age spectrum - I was diagnosed with inflammatory arthritis (psoriatic arthritis) 3 years ago at 65 so I don't know how relevant you'll find my response. I take sulfasalazine, methotrexate and the adalimumab biosimilar Amgevita. The addition of the biosimilar was what made the difference to me and I can now function pretty well.

    I don't know if your health authority has a Pain Management service - I was referred to one and found the consultant very helpful. I was also referred to a rheumatology physiotherapist and did two 12 week one-to-one online courses with her that helped greatly. I also joined the free Nuffield Health Joint Pain programme which I'd recommend.

    Like you I don't like taking painkillers so try to avoid them. The pain consultant prescribed lidocaine patches and capsaicin cream which both helped with joint and back pain. Unfortunately there appears to be a production issue with the cream so I'm only using the patches at present. I also wear compression gloves for my hand joints, compression socks for my heels and have bought a number of aids for help with every day tasks.

    I hope your progress continues

  • I’ve got Psoriatic arthritis and Hypermobility. I’m doing so much better now that I’ve started the biologicals. It’s been a really difficult thing to come to terms with but I’m lucky enough to have the necessary support around me through this difficult time. Hope you are well too, its an incredibly difficult condition.

  • It’s a difficult condition at any age.


    I have all the necessary support in the works, but, of course with the NHS, it’s taking a while to action; a 3-week inpatient clinic in London is being put through for me (allegedly).

    With the biologicals I don’t really need the painkillers anymore, more just equipment and apparatus to help me in my general life now. Hope all is well.