Loosing hope

[Deleted User]

Im 26 and when I was 20 I started getting very bad back pain and I had a few herniated discs. When I was having an injection procedure done the surgeon noticed I had some inflammation on the sacroiliac joint, so I was referred to a rheumatologist. I had various scans and they showed I had possible sacroilitis. I was referred to my local hospital where I had had various scans, tests done and have been put on sulphalazine and methotrexate. I’m waiting to be started on TNF treatment but I just feel so let down by the hospital , it’s been around 5 years and I get told that I might have AS by one doctor and then something different by another doctor, as I’m never able to see the same one. Yesterday I went for a steroid hip injection as I get a lot of lower back and hip pain. I had another MRI but this was on my pelvis and hip in feb and received an appointment on Wednesday last week to have the steroid injection done yesterday. I was taken to the procedure room and prepped and then when I was laying on the bed the radiologist came out and told me that my hip looked okay and he thinks it might be my SI joint causing the pain, I said I had been told I have sacroilitis but he said we don’t know yet. Then later he said I can have the injection into my SI joint but that would need to be another time as they don’t have the correct people to do it. Then he said it looked as though I had changes to my Sacroiliac Joint. I just feel like I’m constantly getting conflicting information and messed around. I received a letter the other week for another MRI on my SI joint. I’ve had so many steroid injections in that region though I don’t feel like I want to have any more of those, as they don’t seem to help. Then I feel like it’s all in my head the pain. Some days I can hardly move or walk and it makes me feel so down that the doctors don’t seem to ever give me the same answer or support. I just feel so alone.


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stickywicket

Don't lose hope, Kirsty. You are not alone. You're with us.

Your arthritic journey does seem to have had a lot of twists and turns but that happens sometimes. The picture isn't always clear and straightforward. You are on DMARDS which is a very good thing for any kind of inflammatory arthritis. The rest will sort itself out more clearly in time. The waiting and wondering is always stressful but we are here waiting with you.

palo

Hi Kirsty,

Life sometimes does suck doesn't it.

I am getting to the conclusion that doctors have built up expectations that they can heal or cure anything but we're finding out they can't.

Chronic conditions bring challenges not just to the patient but also the medical profession which seems swamped. They give so much conflicting information and advice and trying to sort through anything becomes a full time job.

I can only say be strong and try to remain positive.

dreamdaisy

I think we all do that from time to time no matter how long we have been juggling the arthritis balls. The never-ending bother with meds, feeling rough, feeling rougher, being in constant pain, very few understanding what it's like to be so young and not 'right' even though we look OK is a great deal to manage, let alone trying to do so with grace, humour and style.

I began back in 1997 and finally received an accurate diagnosis in 2006. That changed nothing, I was already taking the right meds which were doing their limited best as it was only the label that was missing but the five years between the onset and starting sulphasalazine in 2002 was a tough time. I lost hope again when the OA was diagnosed in 2011 but it soon returned: I am, by nature, a Tigger rather than an Eeyore and I refuse to let this dratted malarkey beat me. It remains necessary, however, to take an occasional dip in the PoSP (Pool of Self-Pity) because it is hard work living with arthritis. We all know that, we are all doing it, we all get it because we've all got it. DD

bubbadog

My problems started when I was a 12/13yrs old and I was passed from one consultant to another told it was 'growing pains' then when I was in my early 20's I started having problems with my legs giving way, joint swelling and pain which caused me to have time off work and start hospital appointments growing!! which carried on into my late 20's till one day I got a letter from my boss saying I was fired due to health problems! Now in my early 40's I have a diagnosis, I've had one knee replacement! And it's took a long road I tell you! Some days are bad but there are good days as well so don't loose hope! This site has been an amazing support and they are all great on here so we are here if you need us!! t4591

[Deleted User]

Thanks everyone for being so nice. It’s really good to know there are other people I can talk to about the frustration sometimes.

Hopefully once I have an mri on my SI joint it might help with the diagnosing. I went to the hospital today for an appointment with a consultant and I wasn’t told much else but he has increased my methotrexate to 5 tablets a week instead of 4, and sent me for a blood test to check for some conditions I’ve not been tested for before.

Hopefully when I get sent my next appointment and go to it it might be a bit clearer with any luck on what’s wrong.

I’ll keep my fingers crossed and just try my best not too get too stressed and upset.

Thank you all again, I really appreciate the help x


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stickywicket

Try not to get too hooked on diagnosis. You know you have an inflammatory form of arthritis and are on the right meds for that. Perhaps you also have OA - many of us do - but that will be mainly a matter of pain relief. Nothing much will change.

dreamdaisy

I found that a diagnosis made no difference whatsoever to my every-day life because it did not change the constant challenges, constant pain and constant setbacks. It didn't even change the meds. :roll: It did, however, give me the chance to learn a great deal about stuff I never thought I'd have to bother about. DD