I haven't posted for a while, but have been reading the daily updates coming into my email account.
I'm not too good at the moment, lots going on that I won't bore you with, a quick summary:
After paying for MRIs which showed florid synovitis, bone erosions and more I was switched to Adalimumab...I've only had 2 injections, but so far no response...rather I've had to increase my daily oral prednisolone to be able to get out of bed.
I've now had 5 (confirmed by xray) and probably 7 spontaneous rib fractures over the past 3 months. I have been reviewed by the Prof. who still believes that I am on the correct treatment of Zoledronic Acid infusions.
Yesterday I was seen by my neurosurgeon who was a delight and spent a lot of time with me. My recent sacral / lumbar MRI (NHS) show further spinal occlusion, hence my increasing altered sensations, now in both legs, and my decreasing mobility. Fortunately the sciatic pain has not increased 🤞. Surgery is possible, but very high risk, and would do nothing to help my lumbar pain. I have more than a 50 % chance of being left worse off. We opted to leave further surgery for now. I'll be reviewed in one year.
I have also been diagnosed as pre diabetic, but managing diet / weight successfully for now.
My Adult Disability Payment (formerly PIP, changed only in Scotland) and blue badge are up for review and I have a small , but elusive water leak in my house.
Apart from the above, all is well 😂.
Seriously, mentally I'm surviving, had a long chat with my GP too and know that he is there, if I need help.
I hope you are all as well as you can be.
Written by
Mmrr
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I’m so sorry to read of your trials and tribulations. Sometimes things just seem to go on and on. I truly hope that you’re able to move forward and are still positive despite these issues. All best wishes and sending a hug and hope xxxx
I’m so sorry to hear about all the problems you are having. The fractured ribs alone sound horrible. Easy to say but try to stay positive and I hope you can get some relief. Sending hugs. X
I was hoping you were at least stable.. wish I could say something to make things better but I can’t. Do know I often think of you and always live in hope that you are pain free . X
Gosh, that’s not a lot of fun is it! At least the sciatica has not got worse - that has to be a win. Nerve pain like that is just awful. As for not opperat8ng that’s probably a wise decision. Years ago at the start of my spinal problems the consultant I saw said he could operate but that he had a 100% success rate and he didn’t want to spoil it by operating on my back - although I had terrible sciatica and on.y knew I was washing my right leg because I could see myself doing it I didn’t have back ache and he felt if he operated I would end up with it. I was quite happy to agree with it. I had a couple of steroid epidurals that fixed things for a very long time.
So good to hear from you, good luck with your blue badge renewal etc and as for the water leak - well, that’s all you need isn’t it! 💐
Thankyou.I've had 2 microdiscectomies, a hip replacement, a basal cell Carcinoma removed with a failed skin graft on my nose, and 7 rib fractures in the past 2 and a bit years. I'm avoiding the surgeon's knife again , unless I have no choice. Fortunately my neurosurgeon is of the same opinion 😍
Hope the Adalimumab starts to work soon and I know some anti TNFs can work very quickly for some (Enbrel did for me) I think it may take a bit longer to work for you so keep faith with it and hope you can work through everything else. 🙏🩷
Oh dear Mmrr you're having a rough time - don't you find one thing goes wrong and then several others follow. It is a good job you have a GP you can talk to (I can't even remember what mine looks like 😁) Hope you are on the road to successful resolution of your problems whether healthwise or that pesky water leak
Gosh, you have a lot going on, sorry to hear your struggling. I’ve had a couple of rib fractures from doing a simple yoga stretch, and they can be so painful. I had spontaneous fractures to my ankles, 18 months apart, which they decided was caused by the bisphosphonate I was taking. Is it possible your infusions are contributing to the fractures. Stress fractures are a known side effect, although more commonly, the femur. Hope things improve for you soon, take care x🤗
Nice to hear from you but sorry you are having such a tough time. There seems to be a lot going on but it’s good your doctors seem to be supportive. Spinal cord issues are horrid and affect many parts of the body. From personal experience I know how difficult it can be living with altered sensations and nerve pain. Hope you get the water leak fixed
Good morning, I admire you so much for your strength and tenacity. As I lack a magic wand I can only send you lots of positive thoughts and very gentle hugs. xxxxxxxx
Wow, I'm not sure how well I'd cope with all that going on. Glad to hear you still have your marbles and good look with the treatments - we all know it takes time. If you start playing on line chess (or some other game) let me know and I'll let you thrash me.
Sorry to hear of all your problems Mmrr but pleased you are still managing to stay upbeat. My hubby seems to have problems permanently with one or other of his illnesses having a party. If only everyone could just have a couple of good days every week to renew our bodies. Sending lots of good wishes and hope your blue badge and Adult Disability Payment review goes well xx Joy
Oh dear. I had hoped your absence meant that you were away gallivanting and too busy having fun to post. It feels so unfair that you are having such a dreadful time and wish you weren't. Sending gentle hugs and healing thoughts.
Glad you are mentally fit given all you have to deal with! I started an Adalimumab bio similar drug Yuflyma in January and although my bloods have improved my joints and pain are worse but they don't seem to want to acknowledge that and say it could be my Fibromyalgia. I am stiff all day now like I was before any medication. I am sure your PIP review will go okay you should have enough evidence. Take care X
Sorry for the late reply - just catching up after a few crazy days with the kids (summer hols have well and truly started!). Good to hear from you but I’m so sorry that you have such a lot on your plate right now, it really is a case of it never rains but it pours. Sending you some wishes for brighter days and a very big hug. 🤗
I'm so sorry to hear you have been through it. Nerve pain is awful and your fractures don't sound fun either.
Well done for staying positive through all that. We are resilient people and can take on a lot, but look after yourself as much as you possibly can. Life can be so difficult with one thing after another. Keep smiling, which you sound like you are doing. 🥰
I hope things improve for you. Take good care of yourself. Sending love and hugs xx
Lovely to hear from you, but so sorry that you are having to cope with so many problems. Do take care, I hope that at least some of them can be resolved or at least improved. Life can be so unfair, and it's so hard to keep going when you feel 'it's one step forward, and ten steps back. Best wishes x
Gosh, sorry I missed this at the time. What a horrible, horrible time you are having. Your poor body, I hope since you write this something somewhere has improved a bit for you. I’m thinking of you and sending you the most gentle of hugs 💐
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I hope i haven't done any damage.
What can I hope for?
My new wheels
Well I posted a while ago !!!
