Where to go from here?

[Blueberry91]

Hi, I'm completely new to this to please bare with me, might be a bit long too so sorry...

I'm 27 years old and I have 2 young children and an amazing husband. I usually work as a health care assistant at my local hospital (I'm a bank worker so tend to do 1 full 12 hour shift a week but only for about 1.5 years I was a stay at home mum before).

Around the beginning of the year I noticed some back pain developing and initially didn't think too much of it as I'd had back pain on and off for years. But this was different and just got worse and worse all down my spine and around my hips/pelvis. I also noticed other aches and pains all over and a lot of stiffness in the mornings and severe fatigue. By mid March I was off sick from work, due to the physical nature of my job I was completely unable to do it.

I also have a problem with my left wrist which is as yet undiagnosed so I had seen a rheumatologist before but had been discharged as they didn't think they had anything to offer other than that I was hla-b27+.

So i got myself referred back to the rheumatologist and saw them in April. They seemed to believe I had a form of Axial Spondyloarthritis based on my symptoms and family history. She gave me some anti inflammatories (etoricoxib), advice and sent me for and mri.

The mri didn't show any inflammation but did so some degenerative changes, particularly at l4-l5 and t7-t8 where I have a small disc herniation but that doesn't seem to be causing my issues (so they say).

So now I've just been told to keep taking painkillers and nsaids indefinitely and try physio (clearly they don't communicate because I've been having physio since april and am just about to finish up my course of hydrotherapy).

So now I don't know where to go from here. I use crutches from my physio to walk because it's too painful to walk. I'm in pain literally all the time. I wake up in pain in the night. I'm so stiff Its just awful. And i have to wear a splint on my wrist almost all day when I'm out. I take cocodamol and etoricoxib but I'm under the impression they may not let me have the etoricoxib from now on since the rheumatologist doesn't want to know.

I'm so young and can't work or play with my kids and my husband has to help with everything because I can't do it. It's so unfair.

Sorry for rambling it's nice to get it off my chest I'd nothing else.

Thanks.

[YoungBiddy]

I’m so sorry that you’re experiencing this at such a young age. I found it difficult to get diagnosed but eventually was diagnosed with severe OA in my left shoulder and two years later with fibromyalgia.

I just had to keep going back to the GP and consultant and making a fuss.

The first consultant that I saw (privately) did not listen at all and diagnosed me with frozen shoulder. I was unhappy with this as I didn’t believe that the diagnosis was correct (largely because none of the symptoms matched). I complained to the insurance company and they agreed I could see a different consultant. Six months later the OA was diagnosed in a shoulder arthroscopy.

Two years later I was also diagnosed with fibromyalgia. I have a long list of prescripton pain medication which I take as little as possible but I use a magnetic ankle bracelet which has relieved my severe neck pain at night and I have reduced my pain killing meds significantly since wearing it (I wear mine 24/7 and it is a youStreamz band)

I am now much more active than I was when I was diagnosed although the fatigue persists. I have had to learn to ask for help (carrying, lifting etc) and I try and make sure I have at least 8 hours sleep a night.

I would suggest continuing to see your GP and reminding him that the pain and fatigue are disrupting your every day life, and as hard as it is, asking your husband to help you isn’t a bad thing.

I feel quite resentful that our family life has been disrupted by my illnesses, but I am the only one in the family that is resentful - my husband and kids just muck in.

I can’t hang up wet laundry so my son does that. I can’t stand up and iron for hours so my husband does it every two weeks while watching Formula 1 (amazing all the stuff that now doesn’t need to be ironed!!!). I can’t easily carry the laundry down to the washing machine, but I can sort it out and stuff it in the machine. My daughter helps with cooking and shopping.

Work out the things that you can do (around the house and with the children) and the things you definitely can’t do. Show it to your husband and think about how to divide up tasks between you. And then work out what is essential and what isn’t - kids don’t need a bath EVERY night, but brushing their teeth is a necessity. Work shirts need ironing, t-shirts can just be folded neatly.

If your children have a nap during the day, try and nap when they do to recharge your batteries.

Hope things improve for you very soon. X

[Blueberry91 in reply to YoungBiddy]

Thank you it really helps to feel that there are people that understand. I will deffinalty be going back to the gp and explaining how much it is affecting my life. All of those tips are amazing I will keep that in mind and I do really have an incredible husband who has recently discovered he can clean and cook 😂

I'm glad things have improved for you and you got the diagnosis in the end. Thank you

[YoungBiddy in reply to Blueberry91]

My final tip is that I say thank you a lot - my husband always says I don’t need to but I notice that he and the kids are happy to know that I have appreciated their help. X

[bear4ble]

Possibly - you may wish to investigate Pernaton, CBD Oil, Co-enzyme 10 and the drink Kefir. Hope useful.