I have increasing stiffness worst in the mornings especially in knees, ankles and hands, and some days in hips. My hands never get back to normal and have a lot of pain. Stiffness goes on all day if I sit down for more than a minute. Eating lunch today was a problem as pain made me not want to hold cutlery. Depressing. Am on hydroxychloroquine, 4 weeks now and can't say I see any change. I know I have to wait maybe 12 weeks. But what if it makes no difference by then? Am so sick of everything hurting and looking like a geriatric when I try to stand up (am only in 40s). No confirmed diagnosis as yet, clinical signs are like RA (pain, swelling, stiffness, symmetrical etc) so consultant put me on Hydroxy, but no markers in blood and nothing to see on either ultrasounds or X rays of feet and hands which explains the swelling and stiffness. Really fed up, been dealing with hand limitations over a year and now leg problems increasing, and I can't see an end to this. Will I ever get back to normal hand movement? or wearing my wedding ring? Feel sad :-( Next apptmt in 3 weeks.

5 Replies

  • Yes it will improve. The first few weeks are the worst I found x if it's really bad you could call the Helpline at the hospital and they maybe give you a steroid until the drugs in, worth asking. I didn't wear my ring due to swelling but now I get it on, although it got stretched a bit.

    Hang on in there. The positives are the treatment has started and can be tweaked. Patience is definitely a virtue in this game xx hugs

  • sorry you are struggling just now. Things will improve once the meds are sorted, but you may never be free of all pain. Take this a day at time, do what you can to eat well and keep joints moving. Good luck on your journey.

  • I suppose you have changed your diet to an anti inflammatory diet. Depending on what you have. My son has AS so Ankylosing Spondyitis thrives on starch , pasta etc. so he is on a low to no starch and almost no dairy, only greek yogurt which is a lactose free one, Probiotics, and a food enzymes and a multi vit which is high in anti inflammatory ingred and whole foods and omega 3 also. His Dr is okay with it. He was diagnosed in Jan this year, and is feeling not two bad. Still abit sore, low energy at times. his flare was in Dec and was real bad and that is when they did all the tests.. A lot of auto immune stems from the gut health, the good and bad bacteria. balance.Reading a book by Amy Meyers who is a MD but also a Functional Medicine Practitioner Excellent book, bought it on amazon Bone broth is excellent for healing and so good for us. Check it out on line. Along with your meds to start working, I am sure you are doing what you can. hang in there.

  • So happy you mention gut health! This is such an important topic and not many people know to look to this area for alternative ways of healing. Sounds like you're doing great with your son, so far. He's lucky to have someone so supportive and committed to learning more to help him heal!

    I wanted to recommend some further reading to you, that I thought might help. Restore by Rachna Chhachhi is a great resource to learn broad concepts for healing the gut and forming a healthy gut. The Good Gut, is another great one. This is a bit more technical, but still worth a look.

    Best of luck to you and your son! Keep fighting the good fight and never stop learning 😊

  • You might also want to ask the doc for something for pain, and if you can take Ibuprofen, that will help with the inflammation too.

    It WILL get better - it just takes a while. Sorry. I know that is not the most happy answer...

You may also like...