I'm hoping someone can offer some advice. Feel so lonely with these symptoms. I'm under rheumatoid. Was having joint pain in my fingers, stiffness in wrists and some ct symptoms. More recently I have noticed my hands in particular palms and fingers becoming very flushed throughout the day and at night intense burning pain almost like what I could imagine a blow torch on skin would feel like. In the last few months I've noticed my fingers have been swelling up so much so I'm having to remove my rings at night. I have two young children one is 4 years and one just turned 1. I've refused strong painkillers for this reason. So only taking naproxen, paracetamol and at times amitryptline low dose. Prior to my last appointment I had normal blood results however In the last few months I've noticed the sausage looking fingers and also experiencing pain/burning in my toes. Hubby tries best to understand but I think I'm driving him insane as there's no positive bloods and let's face it if your not experiencing pain then you don't truly understand how horrible it can be. I've just recently returned to work putting on brave face and not disclosed symptoms to anyone yet.
Is anyone else going through something similar. I'm desperate to know this isn't something that's going on in my head.
Thanks x
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Felix08
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Oh I hear you. !!!! I suffer with burning feet every night and when I’m resting. I was told by a clinic nurse this is part of RD. My bloods are generally good but like you have swelling of hands and feet ( had to have my rings cut off) and my hands and wrists as well as ankles and feet are stiff. It means your disease is active. I’ve just started a biologic along side methotrexate injections I’m hoping this helps
I suggest you contact you Rhuemy team they may give you a steroid injection to help for now and make an appointment to see your Rheumatologist. ( take photos of your swelling and keep a diary of your symptoms)
It’s definitely not all in your head these are symptoms of RD. it’s hard for people to understand this disease it’s so complex. Thankfully people on here do and we are here to support you.
Glad I reassured you. You really need to let work know. Appointments flares etc there will be times when you need time off or reduced hours so they really do need to know x
Definitely agree, taking awhile to come to terms with the fact it's apart of my life now. I think I just pushed it all aside, all the horrible symptoms to back of my head and focused on my new baby but now things are changing and ramping up your right. Got to look after ourselves best we can and hopefully with time things will improve. X
I too pushed it all aside convinced this disease wasn’t going to change things 🙄🙄got that wrong 😁 . I applied for pip ( but of a faff) but it has taken the stress of money worries away as I had to reduce my working hours. If your struggling to work full time might be an option. Hope things improve soon x
And I hope you are beginning to feel better also. That snowball effect one thing after another but glad it's sorted now for you. Thank goodness for forums. ❤️ X
Best advice I can give is google Mikhaila Peterson and read about how she changed her diet around her RA and effectively cured it. My father has RA and we used her approach and while it didn't work miracles, it helped to bring his inflammation under control and his rheumatologist is amazed at the condition he is in. Two years ago he almost needed a wheelchair, and now his RA moved visits from 6 months to 9 because hes doing so well.
CBD oil seems to help him too , he takes that daily along with Lions Mane mushroom caplets to help with nerve regeneration.
Hope this info helps, and remember you're allowed to show that you're hurting.
I too look after too young children and find it hard etc to hold their hands to cross the road or to tie up my shoes laces. My hands and feet, it used to be just hands felt like they were on fire. Weirdly a hot shower helped, I know heat does not help inflammation but just to get relief for a few moments it’s worth it.
How do you know your bloods are normal?
You can have a slightly raised CRP which is still classed as normal but shows signs of inflammation.
Keep a diary as you can guarantee that on the day your appiontment is the swelling is not as bad as it has been
Look up the DAS score as this will give you an idea of how they rate your disease.
After about a year of being in pain, multiple steriods etc I was approved for biologics. Which is the next step after DMARDS. In fact on the day they were suggested my DAS score was 7 which is high disease activity.
It’s been a scary journey but I am glad I took pictures and kept a mini diary. Nothing epic just what hurt and was swollen everyday and level of fatigue
The Biologics are early days and that in itself is a process but been well worth it. I have more energy still in some pain but nothing like it was and it’s early days.
And with regards to your husband, I understand. I ended up taking mine to an NRAS conference as he no patience or understanding. He has been a million times better since!
I have seronegative RA treated with Hydroxychloroquine.400mg per day.
I developed burning red feet last year and after ultrasound scans it was found not to be active RA but nerve pain. In my case neuropathy nerve damage of unknown cause .
Burning is nerve pain and it may be caused by nerve entrapment due to your tissue swelling so getting on some DMARD to reduce the RA reaction or steroids in the meantime may help.
The redness is called Erythema and caused by blood capillaries expanding to carry more oxygen to the nerves affected.
I also take a natural supplement Alpha Lipoic Acid 600 mg per day which is an anti oxidant that helps this nerve problem and reduces the pain and tingling.
Nerve pain is almost always worse at night and I find if I take some form of aerobic exercise like walking or swimming during the day this helps too.
You should push for a rhematoid appointment as soon as possible and get their help.
You need to get back to rheumatology, - but a practical suggestion if you haven’t tried yet —I swear by my compression gloves - obtained via Amazon - worn at night to stop swelling fingers, and in the day if I need, or to support hands when on computer, gardening, cooking, shopping etc .
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