'Help i need somebody help' Great Beatles tune but poignant to how I'm feeling!

[Jaxine]

Hi everyone,

I've not been on this forum for some time now, mainly due to grappling with the constant day to day coping with this disease! 3 years diagnosed and still not controlled on drugs. I'm currently on Humiri which just isn't targeting my RA, unfortunately due to not being able to cope with Dmards I'm only on one Biologic. Until now my RA has only effected my feet, hands and knees but it seems like the disease has now progressed as it is attacking my neck and lower back. I thought the pain was bad enough in my smaller joints but the pain I'm experiencing now in my neck is on another level! Debilitating does not do it justice.

I would love to hear from anyone who is also experiencing the same symptoms of RA. I read that it normally takes years for RA to start attacking the neck and this shows signs that RA is really progressing. I'm worried now that the damage is done and as we know drugs can only stop the the disease progressing they can t eradicate the damage. Of course I will be speaking to my Rhemy nurse tomorrow who will hopefully contact my consultant but in the meantime any support or advice would be so much appreciated. Feeling very sad at the moment as I literally can t move my neck and the pain is unbearable. Xx

[Hidden]

Oh I so understand. Like you feet and hands were the main joints and a struggle to find main drugs. I too started getting neck pain and then other pains joined in with skin sensitivity and other problems. Made a list and boy what a list and then diagnosed with fibromyalgia as well answered so many questions. I’m not saying you have this but make a list and contact your rheumatologist they need to know everything.x

[Jaxine in reply to Hidden]

Oh I'm sure I have Fibromyalgia too! I just had no idea that RA could effect your neck. What advice and medication were you offered for your neck pain, did it go away?

[Hidden in reply to Jaxine]

It took a while to distinguish between the two. Paracetamol is the only thing that helps fibromyalgia. I also take pregablin which really helps with my nerve pain in my feet the bonus it helps my neck . I think you need clarification is it RA or fibro or both. Fibro I’m struggling with more now and slot if my foot pain is fibro. I just can’t push myself physically without repercussions. Now have hydrotherapy. Just started so will see how that works.x

[Deeb1764 in reply to Jaxine]

Kindle Dr Chaitow book on Fibro (99p) I got it and lightbulb moment for me. For me neck and back issues are definitely more Fibro for me but then who really knows. Its like the what is what and does it make a difference which disease it just BLOODY hurts!I have found duloxetine worked for a while ie 2 weeks but had severe reaction to it (like this with many drugs) so now waiting for the next one to be prescribed by GP!

[Pat9442]

I too have changes in my neck due to RA and am never free of pain. I see a consultant at the Pain Clinic and he recommended Botox injections. Although I still have pain, mainly first thing in the morning, it is no where near as bad as it was.

[Jaxine in reply to Pat9442]

Does the botox injections help your neck pain? Or were your meds changed. I'm just worried that when RA advances into the back that my RA is going to get even worse.

[Pat9442 in reply to Jaxine]

Yes Botox definitely helps with neck pain. I am only on Toczilizumab by infusion which helps the rest of my joints and the fatigue

[Jaxine in reply to Pat9442]

Ok thanks for reply I'll talk to my consultant

[GranAmie]

Feet were my main prob, flat flat flat and weak ankles from early childhood. In the early 50s they gave weekly electric shocks [yes!!] in footbath and had to wear MENs brogues at a timw when slip ons and teenage stuff was appearing... so very demoralised, but got over it. PMr [muscular rheumatism] developed 1998 and RA diagnosed 2015. MTX didn't help lungs, but recovered onto Truxima biologic and haven't looked back since, so there IS hope.. Biggest lesson 4me was to pace myself, rest often and avoid or reduce contact with stress factors or stressors, ok? Have had neck shldr probs for many years b4 all this but regular massages and gentle yoga/ stretches, even in chair all help. So don't lose hope, .. 80 next year, retired psych and optimist xo

[Jaxine in reply to GranAmie]

My feet have always been my main problem I thought that bad enough but neck pain debilitating. I'm glad you've found the right meds for you I pray that I do!

[Marionfromhappydays]

I've got it in neck, ribs,back , jaw everywhere! Now getting daily headaches and migraines due to neck pain. I find the heat pad really helps.

I'm awaiting MRI results, Drs think it could be psoriatic arthritis or AS.

I wouldn't read too much into getting it, you might have a spondylopothy as well as RA 🤷‍♀️

Sounds like maybe a change of medication needed ?

[Jaxine in reply to Marionfromhappydays]

Thanks. God dreading an MRI scan I'm so claustrophobic! I think they do have open and stand up ones though. Blimey you poor thing having it everywhere you're newly diagnosed aren't you?

[Marionfromhappydays in reply to Jaxine]

When they play music during the MRI it really helps x

Yeah, I was diagnosed May 2020 which when you have it seems like an eternity !

Hope you can get things sorted out, sometimes you feel you just can't get away from it doesn't it .

[Jaxine in reply to Marionfromhappydays]

It really is a dreadful disease isn't it!

[Wobbies]

Know how you are feeling. Flat feet has not helped but all my joints are affected. When my spine plays up that is really bad as you feel like you cannot move literally. Hope you can get sorted soon, although every day feels like an eternity. Thinking of you. x

[Jaxine in reply to Wobbies]

Thank you Wobbles. I'm going to have change my meds again!! I really prayed this nasty disease was not going to attack further joints. Hideous!! X