Ankylosing spondylitis/fibromyalgia

[Andersonx3]

Hi ladies, so before getting pregnant I was signed off of work (and also then fired but that's another story) for chronic back pain. I'm still under investigation but have been told it is either Ankylosing spondylitis or fibromyalgia.

I'm 16+4 and have been suffering for horrific back pain, which had subsided until now - thanks hormones! However now I am having to hold furniture when walking and crawl out of bed, cannot bend over to pick things up or work at low levels. My job is purely desk based so sitting at my desk all day is agony.

I was taking tramadol, naproxen, omeprazole and gabapentin before getting pregnant but obviously nothing anymore. Does anyone have any tips?! Should I see anyone?

Try acupuncture. Can really help with FM and back pain. Just make sure they are registered with BACC

Also pregnancy yoga. do you have tight hamstrings? Can you touch your toes easily? As this often causes bad lower back pain.
Hope you find some relief I have FM. If it is this you will have to find other forms of help other than pain killers as you become immune to them and potentially addicted plus they can cause long-term major problems. Exercise (though feels impossibly painful foe the first 5 minutes) really helps and has been clinically proven.

Surely as you're still being investigated you're still under a specialist? Also, as you're pregnant, you'll be seeing your GP? I'm not sure who else you would need to see? Becoming pregnant whilst taking such strong medication and without an exact diagnosis was always going to be challenging. You're probably going to struggle through the rest of the pregnancy I'm afraid. If the pain is too much that you can't do your job, you'll have to go on sick leave until mat pay kicks in. Hope all goes well!

@Yinyen I will look into acupuncture! I don't have tight hamstrings, i can touch my toes quite easily (when bump isn't in the way!).

I was very good at only taking painkillers when I really struggled and would try natural methods like walking, hot baths etc in the first instance so luckily not had any adverse affects (addiction, immunity) so far.

I've been told I can take co codomol but not entirely sure if I want to, but at the same time I need to get to work & try and carry on as normally as possible!

@Soontobe60 just before I got pregnant I was dismissed from my rheumatologist but sent for a second opinion with another by my GP - unfortunately the day of my appointment he was involved in a car accident. Since then, nothing has been re booked and because of the pregnancy I have just let it slip to one side, focussing on MW apps and so on. I think I'll see my GP, he's amazing and very supportive of my whole situation, hopefully he'll be able to advise me in some way.

I'm fully expecting this to go on for another 23 weeks, lucky me! However as long as baby is okay, I'm sure I will be. Thank you for your well wishes.

I have AS & currently 13 weeks pregnant. Most people go into remission during pregnancy but we are obviously the few that didn't! Has the doctor mentioned biologics to you yet? I'm on humira, I inject myself every 2 weeks, but doing it every week now the last few weeks as I'm flaring big time.
Working at a desk ain't going to help you at all! I'm not sure if they have explained AS to you, AS attacks the body with rest, so the more you sit the more pain you will have. You need to move as much as you can! I try walk everyday, used to do 6 miles a day, at the moment can only manage about 1. Support your back in bed, try place pillows around you so you don't move in your sleep as that can be agony. Eat well!!! Lots of fresh food.
Please get on to your doctor or your consultant and tell them your pain is getting worse, they should be able to do some pain management for you

@starflake sorry to hear you've not gone into remission! I think I'll try see my gp after work today and see if he has any suggestions. I'm not on any biological yet as my first rheumatologist didn't wanna know, yet my gp is desperate for a diagnosis and proper treatment for me!

Prenatal yoga was a godsend for me.

Getting a diagnosis now when pregnant Will be hard. have you had an MRI yet? That's what confirmed it for my specialist, I've fused in my left pelvis which showed up on MRI, I'm also HLAB-27 positive, have they done that blood test on you yet? I was in remission for 3 years before I got pregnant, they do say if ur symptoms are bad pregnancy can relieve them & vice versa.

@TazzaRazza MRI showed no fusion so rhuemy dismissed me. I'm HLAB-27 positive!

@TazzaRazza sorry tagged the wrong person!

@starflake see above comment!

I was quite lucky, I was a clean cut case, have heard of people fighting years for a diagnosis. Does ur doctor do regular bloods on you? I get bloods done every 3 months, there will be markers present in your blood work to show high levels of pain & inflammation.
I would definitely pay a visit to your doctor today, my rheumy was concerned about my blood work a few weeks ago as markers were all very high & she said that makes the baby high risk to the side effects of that pain so it's important to get the pain under control.

It's a pity you hadn't shown signs of fusion yet! Have you any other autoimmune problems related to the HLAB-27? Could make diagnosis easier.... Skin problems? Eye problems? Allergies? Stomach or ulcer issues

Hi OP. You really need to see a rheumatologist. As good as your GP may be, they really will not have the specialist knowledge that a rheumatologist will have. A lot of these auto immune illnesses can take years to diagnose as many have the same symptoms. Biologics or any other disease modifying drugs can only be considered by your rheumatologist, your GP can only really prescribe painkillers and try to help with some of your symptoms.

I have spondyloarthropathy and have been on Methotrexate and Sulfasalazine for several years which worked brilliantly. Have been having a horrendous flare for 3 months and now on biologics. Don't let them dismiss you if you are suffering and in pain. I was only really taken seriously when my blood results were very deranged and inflammatory markers were through the roof.

@starflake I have eye issues occasionally, my bowels can cause me discomfort every now and then but nothing I've mentioned so far. I do exhibit every symptom of AS apart from fusion (when I was last MRI'd) which is why my rheumatologist just said it's 'probably fibromyalgia'. It's so hard to get a diagnosis of anything!

@Doublevodka I'm sorry to hear you're in a bad flare

Until I became pregnant I pushed and pushed for them to take me seriously but I got nothing, hence the referral for a second opinion. I think I'll see my GP and get another referral, I'm dreading it getting worse toward the end of the second trimester and into the third!

I have AS - I’m 41, no fusion but do have inflammatory changes on MRI and HLAB-27 positive. I’d definitely be asking to see another rheumatologist. You mentioned eye problems - I had iritis (anterior uveitis) repeatedly, and after years of back pain that’s what finally got me put through to rheumatology for diagnosis.

Like @ipswichwitch I have uveitis which made diagnosis for me easier, repeat episodes of uveitis in my eyes, back & neck pain & then MRI showed fusion in my pelvis. Even x-rays showed my inflammation, do they do x-rays on you? I'm now referred to a reproductive rheumatologist because I'm pregnant, so seeing them for duration of pregnancy for pain management. Ask your doctor can he refer you to something like that for pregnancy