I've been an NRAS member for a while but rarely post. I was diagnosed with Inflammatory Arthritis 3 years ago. I think I'm sero-negative as my bloods never show any Rheumatoid factor and rarely show inflammation. I also never seem to show any physical signs of inflammations and was only diagnosed due to an ultrasound of my hands where my problem first started. The arthritis doesn't seem to be limited to any one place in my body and moves around of it's own accord. It was fairly under control with Sulfasalazine.

I became pregnant (planned) and gave birth in July 2012. When pregnant I came off all my drugs (Sulf, amitryptaline, pain killers etc) and my arthritis was under control due to the pregnancy. However, I suffered with SPD (Symphysis Pubis Dysfunction), basically where pregnancy hormones relax all the ligaments in your body and your pelvis stretches and isn't controlled. I ended up walking with crutches from only 11 weeks pregnant and was off sick from work and more or less housebound from 5 months of pregnancy. I could only shuffle rather than walk. From what I was told this wasn't related to the arthritis.

After I had the baby in July 2012 the SPD disappeared in a couple of days as expected, and arthritis flared up as expected to went straight back on my usual drugs. After 4 weeks I started having incredible back pain, primarily in my SI joint area. I couldn't get into bed, couldn't drive, struggled to pick baby up. GP put it down to post pregnancy issues and said it would go but it didn't, it increased and got debilitating.

5 months later after waiting for it to magically go away I managed to see my Rheumatologist and broke down in front of her because the pain was getting unbearable. She queried inflamed SI joint and sent me for an MRI which showed no inflamed SI joint but did show a slight prolapsed disc. 6 months on from that I am now on a cocktail of morphine, diazepam, sulf, amitryptaline, paracetomol and have had 2 steroid injections. The Rheumatologist seems to have more or less washed her hands of me. I've told her my knees, ankles and feet are now hurting where they never have before, and it feels very arthritis like. She does not want to put it down to arthritis because of my back issue and basically says the back issue needs to be sorted first by Neurosurgery before she will consider that my new symptoms are arthritic in nature. But if so, why has she recommended steroid injections? Aren't they to calm down any joint inflammation? She put me on a 6 month call-back. This seems wrong to me. I'm telling her I have new symptoms which I think are arthritis related, the initial arthritis still isn't yet back under control since giving birth, but I feel as if she's scheduling my appointments as though everything is stable. I understand there are a lot of factors at play in my body now (arthritis, post pregnancy, neurosurgery) but I feel it's wrong to put everything down to them. Especially as Nuerosurgery have said the disc prolapse is not significant enough, nor is in the right place, to be giving me my back pain. And the physio who thinks it is actually my pelvis that is still out of whack has said that can only be cured by Physio.

Today I've woken up with swollen ankles. My joints never swell. Can this really be caused by my back problem rather than arthritis?

Sorry, I'm just really confused and sick of getting passed from pillar to post. I feel like everytime I see a new Doctor/Physio/Consultant all I get it 'Oh well that part of the problem isn't my department so I'll send you to this person who will sort that out and once it's sorted then come back to me'. But because every single person seems to be doing this then how the hell do I actually get sorted out because I'm just going round and round in circles?

I don't even know why I'm writing this, I guess an outsiders perspective might be good because I'm so caught up in it that's it hard to see what problem belongs where and who should be helping me sort it out. I'm just frustrated that 10 months post birth I feel as if my maternity has just been one long period of sick leave and there is so so much I can't do with my daughter. I'm supposed to be going back to work at the end of July but I can't see how on earth that is going to happen given that some days it's so incredibly hard just to get up and down the stairs and the fatigue is still kicking my butt.

Sorry to hear of your problems. The problem stems from the fact that western medicine breaks the body down into separate systems with specialist for each and sometimes (often) little collaboration between them whereas your problem spans many disciplines and needs more of an holistic approach.

What's your GP like? Because he / she is the generalist who might be best placed to deal with you in your current phase? There's a lot to be said for having a meltdown in their presence - and I don't say that to be flippant. Someone needs to take you seriously and as your primary care provider I would have thought your GP is the place to start / go back to.

I too suffer from atypical symptoms - not an inflamed joint in sight - and it's hard for people to get the pain we are in.

hello,

i am so sorry to hear how awful you feel and not getting the right help,

i guess being sero negative does cause problems with a proper RA diagnosis at the beginning .. i was picked up so early because my GP ( who is absolutely wonderful ) picked my symptoms up quickly and by my bloods which came back confirming this with high CRP and ESR levels.

reading your post again you don't mention Methotrexate as part of your cocktail of drugs? this is the gold star treatment, then if all else fails after about 6 months i was then put forward for an Anti-TFN.

if i am at all concerned, worried and so on my GP is my first port of call i have to say, and i know he will help all he can, i was going to suggest depo-steroid injection but i see you've had two.

why not go and see your GP and pour your heart out, and tell him all you've explained here, i don't know whether you can move Hospitals ( i know some Members have )

also you could perhaps give NRAS Helpline a call as well,

i am sorry i can't offer more but the above is what i would do.

let us know how things are,

Suzanne

Hi

I am so sorry that you are in such a quandary. I sympathise with the prolapsed disc. They can be agony.

I wonder if the pain is causing a flare in your RA as you become stressed with the pain. Stress itself can also cause pain without it actually being your RA. The more pain you get, the more stressed you get, the more pain you get. It can be a vicious circle.

I think you need to sit down and talk to someone about this as the situation is not going to be resolved easily or quickly. There are several options. Your GP, NRAS or another Consultant. I don't know if you would consider this but I have twice seen a RA Consultant privately. It costs about £120 per consultation. This gives you the time to sit and talk to someone who has the time to listen. They appointment lasted about an hour. My Private Consultant also works on the NHS but sees patients privately as well. They still have access to all your notes and then can recommend a treatment course to your NHS Consultant. I was worried that my NHS Consultant would take offence at this but he was quite happy to listen to my private Consultant. I contacted my local Nuffield Hospital to see who was on their Consultant list.

It was the best money I had ever spent. I am the only wage earner in my family so it was not easy money to come by but so worth it.

I hope you manage to get something sorted soon as living with never ending pain with no real explanation can be so down heartening.

Take care

Jackie
xx

So sorry to hear what you've been going through , glad you've told your husband how you felt . Good you went and got anti depressants these will help, as long term pain does cause depression ,
Can totally understand where your coming from as I've been there too , but what I will say is things will improve so just take each day as it comes and keep talking to people . Have you got some one who can help you with your daughter , While the pain is bad ?

Keep posting on here as we all understand

Sophie x

Sorry for separate posts, but picking up on another of your points, you say that your MRU showed no SI inflammation. Were you on steroids at the times? Because if you were, they will have suppressed any joint inflammation. That's what happened to me with my Humira screening. You must have active inflammation visible on MRI. I was on high dose steroid when I had the MRI hence no inflammation and no Humira,