Newly diagnosed - NEED HELP!

[heatherthornton578]

Growing up I was originally diagnosed with chronic fatigue syndrome. As of the end of last year it’s now been discovered I have rheumatoid arthritis, in both knees, both ankles, both hands and wrists and quite possibly my spine. I started hydroxychloroquine and sulfasalazine the beginning of this year having to fairly quickly come of sulfasalazine as I was experiencing severe side effects. I’ve since had one steroid injection which seemed to help but I’m sure everyone knows they’re only a temporary fix. I’m now waiting to start something new but not sure what that will be yet. In the mean time has anyone got any other suggestions for managing my pain other than medication, I’m only 20 and just wanting to find other things so I’m not super drowsy all day.

[Scottishlad]

It may take a while to find the correct medication for you. Unfortunately none can be expected to work overnight. RA is different for each of us so it is usually a case of trial and error to find what works. Each trial can be expected to last at least 3 months as the drugs act slowly.

However the good news is that once your disease is under control the fatigue should improve.

I went through a period of chronic fatigue in my 30s so you have my sympathies. The frustration this condition causes is totally understandable. The important thing is to try to live within your energy resources. I developed this metaphor: with chronic fatigue your body is like a mobile phone with a faulty charger. The charger can only put 50% in overnight. So if you use 60% during the day every day you eventually run the battery flat before the end of the day. I learned to try to keep my energy usage most days at a level where I kept my "battery" fairly well topped up. This allowed me to do more on some days so long as I planned to make allowances on the following days until the "battery" was topped up.

I developed RA in my late 40s, I'm not sure if there was any connection to my earlier fatigue but fatigue was an issue until my RA was under control. These days I'm reasonably fit for someone of my age, able to enjoy swimming and cycling.

I hope you get something to help with your RA soon.

[Knip in reply to Scottishlad]

I love your analogy to the battery. It reminds me of the spoons! I can't quite remember the details of that, but as you say, it's important to keep some steam in our engines and not run out of it, or we'll come to a halt. 👍

[sylvi in reply to Knip]

I too agree with that theory and if it works for you all well and good. The person to speak to on here is Kags as she has had it a long time even when she was your age. xxxx

[CagneysMum]

Cold ice packs or heated packs may help ease any particularly inflamed joints. I found that Turmeric/Curcurim natural supplements helped ease some of my joint pain too. Hope you find something to help you until you find the right combination of medication like I did. It took 18 months but I’m virtually pain free now 🤞🤞🤞

[helixhelix]

Heat & ice, compression gloves, gentle stretches or something like Tai chi or QiGong, perneton gel on hot joints, all those sorts of things can help a little bit.

But just to say you haven’t got RA in your hands, knees, spine etc but it is everywhere. Might sound a bit nit-picky but it’s important to remember that this is a systemic disease. So whereas classic arthritis will be (eg) in your fingers, RA is not like that. It’s established in your body and can attack just about anything and everything, sometimes without you even noticing.

[oldtimer2]

Welcome and I hope that you find the forum helpful - remember that most people only post when they are having problems, we forget to do so when we're doing fine, but loads of us are managing well on our medication.

It is well worth learning as much as possible about Rheumatoid Disease as you will have to manage it every day - your medical team only see you sometimes. And make sure that it is a reliable source of information too - there is a lot of rubbish on the internet as you know!I'm sure you have found the NRAS website but that and possible the Versus Arthritis website (which deals with all types of arthritis) are relaible sources of information - and also support.

[Joodee]

Hello and welcome. I would echo all the previous replies. Pain and fatigue are hard to manage until you are on the medication that suits you. Another thing I would add is to use NRAS to connect to others with RA, see if there is an NRAS group local to you and check if they are meeting online or in person as it is refreshing to talk to others that can understand what you are dealing with.

[Hidden]

Hi. I would read up on Fibromyalgia… I had symptoms of CFS for years, but never received a formal diagnosis. I was diagnosed with Fibro after my RA diagnosis as my fatigue was ludicrous. I now take 20mg Amitriptyline at 7pm each night which helps with ‘deep sleep’ and helps greatly with fatigue levels. For me also, stress was the biggest cause of fatigue and flares. Get some Mental Health support through IAPTS (your GP can refer). This is a marathon rather than a sprint. Aim for slow and steady progress; there are no ‘quick fixes’. Good luck x

[SpaghettiIsGood]

Aspercream works good. It's a cream you put on. I used it until the methotrexate started working. I've heard about CBD being good for pain, but haven't tried it

[Hidden]

Hi, sorry to hear about your problems. Many foods are inflammatory and can make things worse. Cut down on refined carbohydrates - white bread, pastry, biscuits etc. Also avoid too much fried food, fizzy drinks, red meat. I feel much better on a plant-based diet. The other thing is exercise - I like yoga and walking, swimming. Try to find things you enjoy which don't tire you out too much! Best of luck

[SpaghettiIsGood in reply to Hidden]

Yes, I noticed if I ate a certain fried food, I would be in pain the next day