Ok to moan?

[Elmo333]

Hi again. I’ve had a 2 month flare in joints that move around every few days which has been miserable. Now my lower back is agony and I just want to cry. I get this back thing quite a lot and the RA nurse says that lower backs have nothing to do with rheumatology. I’m 37. Either way, I’m so fed up of being in pain and feel like such a burden to everyone around me. So fed up. Will be increasing mtx next week. Sorry everyone, I just feel trapped in my own body

[bubblyalex]

If it were true that lower backs have nothing to do with RA why has rheumy buddy app got points you can click to say I have pain there? I don’t know.

I’m sorry it is so tough for you. I know how hard it is and just wanted you to know you are not alone. I hope the extra MXT sorts it. I started MXT last week ... on top of Sulfasalazine and waiting for things to change and the pain to stop 👍🏻

[Hidden]

Hi Elmo,

This bloody RA is one big pain in the backside!!! I get a lot of lower back pain since my hip replacement left me with a condition called Trendelenburg Gait (a limp) 😀. The best thing I find to help it is an electric heat pad and strong painkillers.

Your not a burden, everyone around you has to be aware of your condition and how it changes day to day so please let them know what your going through and make them aware of it.

Please don’t feel alone, we all hear what your saying and know exactly where your coming from . My personal experience (23yrs of it,) is not to fight it and rest as much as possible when your flaring, see your Gp for something to help you sleep till it’s all calmed down. Sending a virtual hug 💐🌈🤗X

[Pippy25]

I'm so sorry to hear you are in pain and flaring, some days it just gets a bit too much and even the toughest of cookies who may have had RD for years have to say darn you RD, you may be 'the gift that keeps giving' but we don't want them! Our bodies are ever changing and it's exhausting keeping up with it all, so never feel alone or a burden as this is something that walked into our lives and we have to somehow figure it all out and find the best way of dealing with it and get the right meds and support we can. So moan away as we are all together in this and do understand. Take care and sending some supportive wishes your way x

[listellor]

i started getting lower back pain and the GP kept on saying you had pulled something , fast forward 3 month later after i had changed GP and i had 3 prolapsed disk which i do think was the start of the slippery slope . I cannot praise my current GP enough on both lower back and RA

[Hidden in reply to listellor]

Hi listellor, I have also been found to have several prolapsed discs and also misalignment of the spine. I have PsA, OA and fibromyalgia as well and many other health conditions. I can only walk a few steps and stand for about two minutes.

I wonder if you could tell me what was done about yours and if the doctors have been able to improve things for you? I hope you don't mind me asking. xx

[Soundofmusic52]

I had the same in the end had a x ray on my back nothing found it ended up to be siatica I was put on pain killers it took about 6 weeks to recover so it was nothing to do with R A which I was pleased about in the end hope you feel better soon stay safe

[Hidden]

Your nurse is talking absolute rubbish. I have PsA, not RA, but my rheum finally confirmed for me last week that my almost 2 decades of intermittent lower back and coccyx pain are part of my arthritis: the mri he ordered in Jan shows sequelae (fatty deposits) in my spine, but particularly my sacroiliac joints, indicative of past inflammation and recurrent sacroilitis. At the time of the scan I was dosed up to the eyeballs on steroids and had been for nearly 6 weeks, but since I finally got off the roids in April, my daily pain through my lower back and right hip on waking has returned, albeit milder than it used to be most of the time. Like most bits of me bothered by arthritis, it fluctuates, sometimes even disappearing completely for a bit, but at its worst, I can’t get up or down from sitting without intense pain, and sitting itself is incredibly uncomfortable, particularly on firm surfaces.

My general understanding is that inflammatory spinal involvement is common in PsA, and less so in RA but far from unheard of either. Having an inflammatory arthritis also doesn’t preclude you from having OA, and OA of the spine is relatively common. I think one of the issues encountered with back pain - and I’ve experienced this a lot - is that it’s an extremely common complaint, often with no readily identifiable cause, and lots of people rush to the doctor with back pain when what they really need to do is decent self-care for a bit. As a result, medical staff can be very dismissive of back pain when from time to time it is something of relevance that needs addressing. What have they done about your ongoing flare? Are you on steroids?

Depending on how low in your lower back it is, there are a couple of things that can help, particularly if you wake up first thing in pain - I sometimes sleep on my side with a firm-ish pillow between my knees, as this helps keep the pelvis and spine in proper alignment overnight. I’m a side sleeper anyway, so it’s no issue for me, but I do sometimes wake up half suffocating myself having had a restless night, so it’s not great if you move around a lot. There are also quite a few videos around about sacroiliac pain/alignment and how to take the strain off the lower back regardless of the cause of the pain. I know I don’t always help myself with the way I sit, but it’s not always easy when you’ve got other bits hurting that you’re trying not to aggravate too much 🤦‍♂️🤷‍♂️

[Elmo333]

Thank you for your suggestions!

[sylvi]

They are partially right about your lower back. Ask your dr for a MRI to see what the problem is regarding you back. xxxx

[Hidden]

So sorry you are feeling so low about things just now, I know the feeling only too well.

I have PsA and OA as well as fibromyalgia amongst other things. The pain in my lower back is extreme and the rheumatolgist kept fobbing me off about it. I once asked her if I might have a prolapsed disc and she said no and that I wouldn't be able to stand up at all if I did have one. I can only walk a few steps and can't stand for more than about two minutes.

I eventually saw a good doctor at our surgery who sent me for an urgent MRI at the beginning of March this year. It showed that I have at least three prolapsed discs and also misalignment of the spine. I was then referred as urgent to see a spinal consultant. Then immediately afterwards, we went into Lockdown which for me also meant being shielded. I have finally got an appointment to see a consultant face to face next week. My GP said that it might mean spinal surgery, but I am trying not to think too much about that.

I can't offer you any quick fixes as I have tried so many things to no avail. Even taking morphine only takes a slight edge off it and it also sends me to sleep and I don't want to spend my life sleeping.

All the best to you and I hope things improve over time. xx