Benepali problems

[Treza42]

I have been taking benepali for about 9 weeks. At first it really felt like it was helping. After6 weeks I went on holiday to Mexico. Carried my benepali in the appropriate gel packs with a letter for customs and a travel sharps box. Arrived fine and put benepali epen in the fridge. Second day there we went out to the beach all day. Came home and someone had left the fridge wide open. We shit it ASAP. I took my benepali as expected. After 10days in the evening before my wedding anniversary my legs completely stopped working. I could not walk and struggled to get up and go to the loo. Hubby arranged for a wheelchair to help me out and it did. But my legs were still seizing up and had no pain killers. It kind of ruined my last few days there. As soon as I arrived home I contacted my general Dr. Asked for a note to work as I could not stand for very long and asked for tramadol for pain relief. I got this and contacted my rhuemy nurse to ask of I could take a injection early. She replied saying no. I am resting trying to get better. Had my first jab since we came home today. Had a tramadol one every 5 hours ish to help with pain. But they leave me feeling drugged up. Dopey. Nothing seems to be helping. I feel like Iam at the end of my tether. I still can't stand up for long. My back aches. I have been wearing ear plugs to get over noise whilst sleeping and it know feels like I have an ear infection and aches my jaw when I eat. I have left a tearful message for my rhuemy nurse and am going for my regular blood test tomorrow. I ache all over and feel tired. But mainly I can't walk for long and my calfs feel tight and tense. Any advice welcomed. Thanks. Sorry this was a s as one. Just don't feel 100% would love a bit of help or advice. Thanks in advance

[helixhelix]

Have you explained to your GP that you have been on long haul flights and have hot and tight calves? I think you should flag this up and get them checked out to make sure not DVTs - unlikely as would be rare to have in both legs, but worth checking?

Amd explain the mishap with the benepali to your nurse, just so she knows. But hope she can offer you some help & relief.

[Hidden]

Was also going to mention long haul flights. Do get it checked out. Do you have any bruising? A long haul flight might make you feel a but rubbish anyway...always makes me feel out of sorts.

I suppose it's also possible you could have picked up a bug?

Really sorry you feel so rotten. What a shame it has spoiled your holiday. I hope you feel better very soon.

[Treza42 in reply to Hidden]

Rung my general gp. Who says no dvt in both legs unlikely. Perhaps start moving myself more. Still not heard back from rhuemy team as of yet? Thanks to you both. Xx This disease does not make you feel to Bright. Xx

[medway-lady]

Sounds like a DVT to me go to A&E asap. I've had one and it felt like that. I really mean like go now !!!! Mine broke up to PE's it is lfe threatening and urgent to seek proper advice.

[Shalf]

Hi Treza, sorry to read of your leg pains and the disruption to your holiday and anniversary.

I just wonder, is it possible your legs may have got sunburn? That can cause excruciating pain and problems with walking. Did you have sunscreen on your legs?

Suzie x

[Treza42]

Yes I am Nicely tanned. I got tested for this a few years ago. Just can't remember the outcome. Xx I have bursa behind each knee. Gp thinks it's that causing the swelling and tightness. Just gotta work on moving it. Xx

[Shalf in reply to Treza42]

It's possible the sun may be irritating the bursa's. They can become inflamed and very painful. I had one on my shoulder. Try complete sunblock on that area next time but it is sensible to have your legs checked. It's impossible to know what's causing your pain for sure on here.

Keep us posted x

[Doughnut61]

Gentle hugs x

[RA2002]

When I was first diagnosed 16 years ago, I used Tramadol for the pain. Believe me, it is not worth it. Although it definitely relaxed me, to the point of dropping asleep all over the place coupled with other side-effects. It is an opiate-based drug and very powerful, similar to Heroin. I continued with it until my other specific treatments were more under control but when I stopped taking it I experienced the worst sort of withdrawal - inability to focus etc., etc. I could go on. I am now much further down the line and take 1 x Methotrexate and 1 x Benepali injection weekly. If I get pain in any joints I take 2 x Ibuprofen which helps. I would say avoid Tramadol at all costs. I wonder if your unpleasant symptoms are as a result of mixing Benepali with Tramadol?