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Benepali & part time to full time work

Posted , 4 users are following.

Jojo80
Jojo80

Hi, I'm 37yrs just been diagnosed with AS. I suffer from back pain mostly during the night and waking up, although have recently started having pains in my hand, arm and feet, so not sure if this is the AS. I also have neck and head pain which i think is due to a disk herniation C5/6. Have tired naproxen which helped with the pain but had stomach cramps and made me very sleepy. Dr prescribed Arcoxia, so far no side effects but i still feel pain with this. I only take medication when I feel the pain is really.. I have pain daily but kind of get used to it.. plus i have good and bad days. Dr wants to put me on Benepali weekly injections... although I wonder if I'm that bad to start this kind of medication. Dr said it will stop AS progressing. So i am in two minds if I should go ahead with this... I'm already overweight and worried about weight gain. Also, I'm always very tired.. so worried if i will feel even more tired. I have a 9yr old.. single parent, working part time.. 2/3 days a week. So the days I'm off I can sleep if I need to, and rest. I recently applied for a job in my team and was successful...more money however it is full time and the job is quite stressful as with my current role. My worry is working full time and what if I can't cope with the tiredness and being it's office job sitting down all day... will my back pain increase, and then dealing with any side effects from the Benepali. I haven't signed the new contract yet as have my reservations .. money over quality of life plus won't have as much time with my son.  Any help or advice would be much appreciated. Thank you 

0 likes, 16 replies

16 Replies

  • maureen61742
    maureen61742 Jojo80

    Posted

    Hi Jojo, I was only diagnosed last year at 51, after years of back, hip, neck and shoulder pain. I already have fusion in SI joint BT's and ribs are fused to spine. I wish I'd been diagnosed sooner then would maybe not have progressed so far. I have been under Rheumy for 5yrs and been on Prednisolone, which allowed me to function although with great stiffness. I was started on Benepali promptly after diagnosis, have had a 70-80% improvement in all my scores, and suffer no side effects. I have lost the weight gained through steroids, as I'm now able to exercise. I work full time as a nurse doing 3 like ng days a week. It differs from your office job as I rarely sit down.  My fatigue has lessened on biologic although there are days off when I chill and sometimes take an afternoon nap. It is best in my opinion to take biologics if offered and allow yourself a fairly normal life, and slightly w progression. Research has shown no increase in cancer rates for AS patients taking biologics, although with RA it is different. You will cope much better at work, my colleagues cannot believe my transformation. I no love ne'er "plough through treacle". Word of warning they do not help with pain in areas where damage has already occurred, so I still need analgesics and muscle relaxants occasionally 

    • Jojo80
      Jojo80 maureen61742

      Posted

      Hi Maureen, thank you for your swift reply and advice. I am sorry to hear about your fusions, and that is my fear if I do not take Benepali. You have given me hope that it can work going full time and with the treatment. The nurse did say I'm very lucky to have been offered the treatment and if I do not take and it progresses with fusing, I will look back and regret not taking... which is true. I'm not good making descions at best of times.  I go back in October and then if all agreed with Docs I will prob start in meds in Jan.  Thank you again, wishing you all the best. Jo 

  • kristy75649
    kristy75649 Jojo80

    Posted

    Hi

    I have as aswel having pain in your hands and feet fingers and especially neck is 100% normal. I fall under the diagnosis of spondoloarthritis which is an umbrella term it includes psoratic arthritis and osteoarthritis and as i forgot the others.

    I have recently been doing hydrotherapy it's been life changing i am normally bed ridden i still have horrible hip pain as they are so far gone but i am still managing to walk.

    If you can find a heated pool and just float you will find taking some pressure off your joints for a short time makes a world of difference. If you can manage to stretch in the water if will do wonders for your neck to stop the muscles cramping around your herniated disc and will help with your weight.

    I have been on steroids and gaind 20 kgs and i can tell it makes my pain worse.

    As for work this disease is full time work you have to work everyday to stay in front of it. Take the medicine before you end up like me with extreme damage. Quality of life come before anything else if you can manage to live on a part time income and if thats all you can handle till you get in front of this them thats ok theirs no shame in not working to manage your condition. Do what you feel is best but if you can find a hydrotherapy place i highly recommend it and if your im Australia you can get 6 sessions through your doctor and medicare

    I hope your ok the uncertainty of this disease is horrible and managing it is exhausting.

    • Jojo80
      Jojo80 kristy75649

      Posted

      Hi Kristy, thank you for your reply.  I am sorry to hear about your condtion. People don't really get it, unless they are going through it. I feel sometimes I'm overreacting going on about the pain and tiredness... as there are people suffering and much worse off than me.  Having never taken medication prior to the AS, to then injecting weekly is a big thing to me... something I need to get my head around.

      Yes I heard hydrotherapy pool is good, I will have to look in my area. I swim regularly on and off.. but find it aggravates my neck where I keep my head out of water(cant swim under). 

      I can manage on my current wage and going FT is only for the money...but in all honesty I know I'm less stressed staying as I am. Once I give up my post there's no going back. But thank you for your advice. 

      From reading the comments, taking the meds seems like the best option and for the longer run. 

      Wishing you all the best. 

    • maureen61742
      maureen61742 Jojo80

      Posted

      Think wisely as AS lives stress. I find on my stressful days my pains are so much ch worse. On two occasions it resulted in me being sick for the next 2 days, as neck and shoulders had ceased up. I would t introduce more stress till you see how your body responds to biologics. I was lucky and responded within 3 weeks, but it can take 6 months to reach its full potential 
    • Jojo80
      Jojo80 maureen61742

      Posted

      My job is stressful now and the full time position is going to be more stress and expectation tbh, this is why I'm so confused as worried I will find it too much. Once I sign the contract for full time, if it didn't work out would mean finding another part time job with flexible working etc which is not easy to come by. Thank you once again 

    • maureen61742
      maureen61742 Jojo80

      Posted

      Tough decisions ahead. But follow your head and not your heart.  Is it possible you could ask to have 3 month trial and if you find it aggravating your symptoms return to previous role and hours? 

      Maureen 😁

    • Jojo80
      Jojo80 maureen61742

      Posted

      Yes they sure are. Unfortunately not, they need to recruit for my position, would have good otherwise. Hopefully it will work out x
    • kristy75649
      kristy75649 Jojo80

      Posted

      Everyone says that but its ok to complain about being tired or in pain or both.

      Pain is pain and it doesnt matter if you kicked you toe or have spinal fusion its all relative and you cant compare yourself to others you will never get out alive.

      I know its scary and you hear alot of horror storys but i take embrel at its really helped eapecially with the joint pain in my hands kness and ankles.

      I understand the whole job thing i fought for years to stay at work in agony because i felt like i would be a failure if i quit but after being in hospital 6 times this year i had to stop work then i had to use a walking stick then i walker and now the wheelchair most the time and every time i have to use it i feel like im not trying hard enough and i should be able to beat this im 28 i should be out killing life.

      But sometimes things are just what they are and i accept it but i never give up ill crawl if i have to.

      My job now is to try get better and enjoy what little life i have.

      So dont beat yourself up to much hopefully you will get great results and you can go full time and live a relatively normal life just cur youself some slack you got this.

    • Jojo80
      Jojo80 kristy75649

      Posted

      Hi Kristy,  thank you for taking time out to reply again. I'm so sorry to hear of your problems, and you are so young.  Must be really hard for you. Yes I hear you, health over money any day. I pray you'll get through this and glad I joined the site to hear from others experiences.  I suppose it's all about the mindset too, as they say positive thinking... something I need to do. Take care and wish you well x

  • CtKathleen
    CtKathleen Jojo80

    Posted

    Hello, JoJo!

    I'm sorry to hear of your struggles...

    When I was working long days at a desk the sitting aggregated my spine considerably. I found the chair made a big difference. The secretary type of chair was less painful as the cushioning and lumbar support make a big difference for me. 

    Also, inactivity aggrevates my AS.  I made a point to go on brief walks once an hour, even if I only walked the 30 feet to the sink and wash my hands. Days I spent with back to back clients and not moving were awful. Sometimes I was in so much pain I had difficulty focusing.  I also felt better the afternoons I spent half my lunch break walking. 

    I cannot offer advice regarding the use of biologics as I cannot use them and have not had to wrestle with that one. 

    My two bits are this: follow your instincts. And take care of yourself with a healthy diet, movement, and managed stress. 

    Good luck!!

    • Jojo80
      Jojo80 CtKathleen

      Posted

      Hi Kathleen, thank you for your reply and your advice.  I am awaiting an ergonomic chair and desk assessment but heard it takes time where I work.

      I take breaks but yes think I need to increase them as at my desk from 10am-6/7pm which is a long day.  I try to keep myself active, gardening, etc but tend to find that pain is worse the next day.  

      Thanks, I'm going to give the injections a go, from reading others experiences.

      Yes I agree,...the doc seems to focus on my weight so need to lose some weight too.

      Best wishes x

    • CtKathleen
      CtKathleen Jojo80

      Posted

      Hi, I was reading through my post and I don't think I mentioned anything about weight loss...?  Movement and getting my blood circulating when I'm at a desk really helps lower my overall pain.   I wasn't even thinking about weight when I wrote. 

      I had a rheumatologist who was very focused on my weight. (She couldn't have weighed 100 lbs.). Doctors said losing weight would lower my pain.  It's true for most or all arthritis sufferers. 

      I've lost 105 pounds since then and currently my pain isn't less - I'm in a 2 year flare.  However, my life has improved tremendously. It's so much easier to do things. I don't fall much anymore, I'm not as much of a burden on my family. I'm more independent.  And I can put on my own socks without falling over!!!  My mood is dramatically improved. Those walks provide oxygen, sometimes vitamin D and release happy endorphins - I think it's my favorite side effect in my pain management bag!

      I hope the injections work a miracle for you. I have read studies showing biologics can actually reverse AS damage for many. 

    • Jojo80
      Jojo80 CtKathleen

      Posted

      Hi Kathleen, no I know you didn't mention weight loss, it's me not you, I was referring to healthy diet as I'm overweight and Dr is focusing on it, so I was saying I need to loose weight too.  

      Dr keeps saying it will help. I am able to do things myself. I need to loose about 3stone to get to my ideal weight, and in any case I need to do it for myself as the weight has crept on over last 2-3yrs where I've not been going gym due to the pain. I used to love going but now it's not the same, that's why I started swimming. 

      Thank you once again for your help. Once I get started on the injections which I recon will be next year... I will update on here. Take care 

  • CtKathleen
    CtKathleen Jojo80

    Posted

    Another thing that's helped:. Pacing activities. You can find a bit of info using pacing as a pain management approach. I spent nearly 20 years in the overdo it and recover cycle. It feels good to get a lot done in a day....  Today I'm enjoying not spending large quantities of my life in pain and recovery mode.   I hope something I've shared can provide you some help or relief. 

    • Jojo80
      Jojo80 CtKathleen

      Posted

      Thank you Kathleen,  I'm glad to hear you're in a better place now, it's good to hear it's not all doom and gloom. All the best x

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