feeling sorry for myself 😭

[Pepsimax72]

Hi. Feeling really down today. Constant pain since beginning of August. I’ve phoned the rheumatology answering service three times. First time (in August) they sent me for blood tests and gave me a steroid injection which hasn’t worked. Second time (in September) I feel like they fobbed me off because I wasn’t this bad on that particular day. Just phoned again today so I know I’ve got a weeks wait before they return my call. Can’t use my right hand pretty much at all and left hand is not much better. Thinking maybe the hydroxychloroquine is not cutting it anymore. Family is very supportive physically but they don’t understand how draining it is mentally. I don’t think I fully understood until this morning when I couldn’t stop crying. I’m sure plenty of you are worse off than me so I feel a bit stupid complaining but I needed to rant and get it out of my system. Thanks x

[virtualreality]

So sorry to hear that things are so difficult for you at the moment, and that your rheumatology team haven't been as responsive as might be hoped. Rant away, you're in the right place. It's totally understandable that you'd feel frustrated and tearful and drained when you're dealing with significant symptoms and the mental load that comes with managing pain and having to work out how to navigate what used to be straightforward tasks and movements every moment of the day. Better to let it all out than keep it in.

Have you considered giving the NRAS helpline a call by any chance? This forum is brilliant but sometimes it also helps to talk with someone who really understands what this is like too. It can be hard for even the most well-meaning friends and family members to really 'get it', and having that understanding is so important at the most difficult and testing times.

With symptoms as you describe, it sounds to me like a medication review is needed with your rheumatology team, so I hope they get back to you sooner this time. Please take care of yourself, rest when you need to, and stay in touch - most if not all of us will have had times like this and we're here to support you 💛

[Deeb1764]

it’s awful when the pain drains you. After 12 weeks of it I am glad I got back on to The Wren Project so I can rant it out! Remember pain is souls destroying. When bad I go and sit in the garden just to get some fresh air and do some breathing exercises. Helps take me away from situation for a bit. 🥰

[3LittleBirds2]

Hello , I can fully empathise with you as I posted feeling very similar earlier in the year and received some wonderful replies and support from members that get what we go through. It’s good you have support but I totally agree that not everyone understands how draining it is to be in constant pain and feeling like you’re not being listened to.

I had similar with my helpline and my last resort was then to get PALS involved and then I got a call!

I hope you’re feeling a little better this afternoon and you’ve have managed to speak to your Helpline, sadly we just have to be persistent and I guess patient but that patience can quickly wear out.

Well done for reaching out it always helps to talk to others who understand. X

[Adorable1]

Hey, wanted to say I’m so glad you reached out. Pain and feeling emotional and low is so awful it’s exhausting.Also when we feel we are not being heard has an affect. You deserve to be heard ! I do hope you hear soon. Sometimes it’s so difficult to reach out too, you are not alone. The NRAS helpline I have found very helpful,

Keep posting there really are some lovely people here, and it helps to get it out..

Sending you all good wishes 🤗

[Monkeysmum]

Sounds like feeling sorry for yourself is totally warranted in this situation. Sending a hug and hoping the team get back to you soon 🤗

[Flinda]

Your post brings back those dark times to me, and it makes me appreciate life more. I think most of us can relate to how you're feeling. Just remember this is the worst time and it will, almost certainly, get better. Hang in there - it'll be worth it. Best wishes. L

[K3-2]

So sorry you're in so much pain. Sending you a big gentle hug. ❤️

[Chester1975]

I’m sorry to hear that you are struggling. It’s nice to know that your family are so very supportive. I have a very supportive husband too. I have RA really bad in my hands and wrists and used to be an avid gardener. It’s heartbreaking when the pain is so debilitating that you can no longer do what you love and what helps you to de-stress. I started on methotrexate and sadly it gave me all kinds of side effects. Then I was put onto sulfasalazene, which did the same. So last week I started on my first biological injection. Humira and I can already feel and see a huge difference. I was sceptical and scared at first as I have a needle phobia but the nurse supervised me injecting myself and I can honestly say it went better than expected. I had a dull headache for the rest of the day but drank plenty of water and have been ok since. I hope you start to feel better and if the tablets are no longer working, perhaps ask the rheumy to pain score you and to see if you can go onto biologics. You do have to try two DMWARDS first here in the uk. Xx 🙏🥰

[Happy5 in reply to Chester1975]

Yup gardening substitute jungle for garden have a gardener who keeps shrubs etc in place, but not really up to the finer side of gardening lol.

All the best.

[Happy5]

Totally with you similarly in constant pain for few weeks now original appt was cancelled moved to following week. Like you feel like just sitting/lying all day sometimes tearful, forcing myself to get up is like climbing Everest.

This condition is exhausting, painful, complicated, distressing etc etc , never feel you can't share , rant or rave on here. This forum keeps me going as know ones on here get it.

🤗

[stbernhard]

It makes me sad to read your post. Constant pain is debilitating and zaps your strength. Deeb pointed out the "Wren Project". I think talking to them might be a helpful thing for you. Have look at their website. wrenproject.org/They introduced themselves in a recent NRAS live session and they are wonderful people.

I hope you get a better response from your rheumatology team.

All the best.

[Chester1975]

I forgot to mention. My rheumy team - whenever I left a message on the a/machine saying I have had a terrible flare and require steroids - they would ring me back the very same day and arrange a prescription. Could you leave an urgent message so that you’re not in limbo for a week or two.

[arvine]

i can relate totally in same condition, chronic pain, osteoarthritis back hip hands joints , still on 4 mgs prednisone, today 5th session of nerve blocks in spine suppose to help nerve pain in leg and groin, apparently need hip replacement per orthopaedic dr results MRI s, , rheumy suggest trying steroid injections or methotrexate, as now he says possibly fibromyalgia as well, other health issues too, in process of making that decision as every day is debilitating brings me to tears also

[HappyD34]

Hello there . I’m so sorry to read that you’re struggling, even harder when you’re not getting the support from your rheumy team . Everything becomes such a battle doesn’t it. I’m glad you wrote your post, there’s a whole mountain of love and best wishes from the people on here, and we all seem to root for each other and yet we’ve never met. Be really nice for a few organised sessions . I hope you are feeling a bit brighter, sending you a big hug and stay strong xxxx