I have tried other NSAIDs other than the ones I’m currently on. They initially started me on Diclofenac and Tramadol. This combination wasn’t working for me and a few times I took it I felt a little “spaced out”. This wasn’t every time, mainly when I forgot to have something to eat with them, which when I was a busy warehouse worker was often as I never had time to stop for lunch, let alone 5 minutes rest. The pain levels were increasing and this was even before I had been diagnosed with AS. My GP at the time did suspect it, I had about eight blood tests (not at the same time, but staggered intervals) all of which showed elevated levels of C-RP and ESR. My blood count was a little low as well but at the time he didn’t seem to bothered by that. His comments were in the beginning “there is something wrong, we just don’t know what.” Very reassuring. I was going back weekly with awful back pain, unable to walk on some occasions as it felt like my back had completely ceased up. I was on my feet non-stop 10 hours a day and in tatters by the end of it! The doc sent me for an X-Ray and it revealed what Paul (GP insisted on first names) said was wear and tear on some discs of my spine. This was 2011.
After even more blood tests my inflammatory markers were still spiked. Eventually Paul said he can do one of three things, 1) Put me on Steroids to try and take the pain away 2) Carry on with NSAIDs and monitor with blood tests or 3) Refer me to a Rheumatologist. I opted for the referral and my first appointment was due within three months cos of the waiting list. The first time I saw Dr Masadski he was very friendly and seemed to listen. I explained what I did for work, how the pain affects me, when it hurts and the level of it. He sent me for a chest X-Ray first, and further blood tests. Not sure what the relevance of the chest X-Ray was for as the pain was in my back, but I went along with it. I was at the hospital all day, work was not impressed, but there we go. They never did think about my health and safety.
My next appointment with the Rheumy was a couple of weeks later, again work was pissed that I had to take time off to go. We went through the X-Ray and he didn’t see anything untoward but based on the elevated inflammatory markers in my blood tests, he wanted to do something called an Integral Bone Scan. I went back to work and explain this to my manager, he was less than impressed and said he would have to send David down to the warehouse to cover for me while I do his job until I’m better. I became customer service for a while. Pretty stressful with depression, having angry customers shouting at you like it’s your fault their parcel hasn’t arrived because there is six inches of snow outside their door. I did have to leave the office a few times in tears. I guess I was feeling very emotional about everything that was happening.
While I was off sick after Christmas with what I thought was gastric flu or Norovirus, I had the call from the hospital to book my bone scan, I had it a couple of days later. The day I went back to work I was called into a meeting and told I was being made redundant due to a restructure of roles in the office and I was no longer needed. The only vacancy they had available to offer me was the warehouse job (the one that was on my contract anyway). I also found out that day I was pregnant, hence the real reason for the sickness!
The next day I was back at the hospital for my results and that was when the Rheumy said I had Ankylosing Spondylitis. My initial response was a puzzled look. He did his best to explain it, which went over my head, and gave me some leaflets about it, including a booklet for a very helpful group called NASS. When I told my colleagues about the condition, their reaction was to laugh and ask if I had ankles growing on my spine. Cheers guys! Things were so busy in the office and the other staff were moaning at how much work they had to do. So why on Earth was I being made redundant? Even the owner of Magnum Boots commented and said it was wrong that they were getting rid of someone when they needed to hire more staff. Then I overheard my so-called friends talking about how they needed someone who didn’t have to keep running off to the doctors every five minutes, someone who will be there all the time. The truth still hurts.
I had to stop my medication of Diclofenac and Tramadol, and could only take Paracetamol during my pregnancy as and when I needed it.
My Rheumy referred me to a physiotherapist after I had left my job which helped a little but I was really struggling with the increasing load I was carrying. After Mackenzie was born 4 weeks earlier than he was expected, I went back to the Rheumy for a follow up appointment. Bearing in mind this was literally five days after Mackenzie was born, the guy tells me I need to lose weight as that won’t help my spine. Who says that to someone who’s just come out of hospital, following a C-Section, having given birth to a child? I found that to be very rude! Nevertheless he put me back on Tramadol, Diclofenac and now also Ibuprofen. He said to take them all together and they should help with the pain, then he would follow up with me in a years time. I carried on with this treatment, taking this cocktails of NSAIDs, while trying to look after a baby, in an incredible amount of pain. After we were burgled I was struggling to live in that house, plus the fact it never felt like my home as it was a home my partner shared with his previous family. We decided to move. A mutual exchange came up and we took it, never looking back.
I went back to my old GP surgery, Paul was surprised to see me, especially wearing an engagement ring and a little boy in the waiting room. He remembered me after two years of absence though which amazed me. Even the receptionist and pathologist did too when I went for an updated blood test. I went to see him about headaches mainly and also tingling feet. He noted I was taking Diclofenac and Ibuprofen, he asked who prescribed it and asked if I was taking them together. He almost hit the roof when I told him yes and who had done it. He said that I was overdosing on NSAIDs and they would be counteracting each other anyway. I had to stop taking the Diclofenac immediately and he prescribed me with Naproxen instead, but to take it at different times to the Ibuprofen. I asked if I could see another Rheumatologist as I felt that he was rude on my last appointment. He said that was fine but would have to be another hospital, and I wasn’t the first person to ask for a re-referral from this guy. Apparently he starts off okay but after that…
I was referred to St.Hellier under the care of Dr Duke, again my first appointment he was very understanding and listened to what I had to say. I had an MRI on my back, then my next appointment he hadn’t had chance to look at the results after keeping me waiting an hour later than my times appointment.
Six weeks later I had another appointment which he said he still hadn’t had chance to look at the scans, so did it there and then, he said it showed wear and tear but couldn’t see inflammation. He asked how the diagnosis was made, almost accusing me of making it up myself. I told him is was a bone scan at East Surrey Hospital. So he said in the meantime I just have to live with the pain, stick with taking the NSAIDs and he’ll gather the paperwork from ESH and confer again in six months.
I went to my new, old GP Poppy Hatfield who saw me through my pregnancy in Godstone and relocated to where I am now. Small world! She dropped the Naproxen as it interfered with the anti-depressants I was taking. Leaving me with Ibuprofen and Tramadol.
That’s where I am currently with my medication. I have booked an appointment with my GP as a few of my Twitter friends have urged me to do regarding changing my Rheumy for the third time and asking about pain management. We shall see where that leads…
Thanks for staying with me this long!
All the best