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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi all
just to pop a post on here to say that I am feeling well in myself, can move my upper body well now and can even manage to wash my own hair (cant dry it yet but we cant have everything can we!)
My issue is still with the legs, particularly my left one, the muscles are all wonky and it wont straighten. the swelling, neuropathy and redness of shins and hard lumps that start in the muscle and eat their way towards the skin are still there.
I cannot walk. In hydro the physio explains that I have lost my sense of "central" and cannot stand stably- the hydro is helping slowly.
I cannot leave my feet down for even 20mins as the left foot particularly swells so much I cannot wear shoes.
my skin has patches of sandpapery feeling bumps.
dermatology say its not for them to deal with. endocrinology say not them and rheumatology say "wait for the cimzia to work". well, with a crp of now 20 I think the cimzia IS working and the legs are no better.
Who else should I try and see about this?
I am very aneamic still and prob start tablets. the stomach ulcer is seemingly improving but I still get terrible cramping in my bowel but this has improved with the cimzia working although sometimes it is agony.
Obviously the joints are all still effected - but my fingers are looking a little less puffy and although my left big toe has decided it would much rather be under the next toe!
Much love to all
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Jenni
I'm so pleased to hear the Cimzia is giving you good relief. I hope someone can come up with some answers re your leg. It sounds as if they want to pass the problem onto someone else. Maybe you'll see more results after some more hydro.
I hope Richard is feeling better.
Love Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
I am pleased that you are a little better thatn your last post. However there are still a lot
of issues which def need to be sorted.
You are very brave. I do not have half your problems thankfully but the RA gets me
down.
I do have big troubles with my feet,ankles . Like you I cannot keep them down for long.
The shooting pains going down is dreadful. Also I get my ankles 'giving' out so makes me
insecure if I am about myself.
Take care
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jenni, I`m so pleased the Cimzia is alleviating some of your problems, but wish someone would get their act together to do something about the rest. Hope the hydro continues to do some good for you. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hey Jenni, its so good to hear u say u feel well inyourself xx
but hope u find someone who will help with leg problems very soon,
what ideas does your gp have of who might help...
or does the physio have any further advice about specialist support? xx
Hope cramps ease - ive got some minor sympathy pains - seem to have developed a two weekly menstrual cycle - starting 2 get more than a bit fed up wiv this now!!
Lots of love and hugs ~ Lizzie xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi again Richard is doing much better, thank you. he has this wk off and then starts phased return next week. 2 half days to start with. Love Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Jenni
Great to hear that you aref feeling better in yourself. I'm sorry to hear that your legs are causing so many problems. As Lyn says- they just seem to be passing the problem on to someone else. I hope that something can get sorted SOON for oyu
Much love
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni,
It's great to hear that you are feeling so much better on the Cimzia and that the hydro is helping you.
Hope there is yet more improvement to come for you, especially for your legs.
Good to hear that Richard is improving too.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi lovely Jenni
First of all so thankful you are improving (apart from the leg) and that Richard is feeling much better.
As your GP is usually so supportive, could you not ask his advice on where he thinks you should go for help with this? Someone, somewhere MUST know what to do to help you.
Our physio does core stability exercises and I wonder whether this may be of some help to you? They help people with brain injury to regain stability and strength and I would hope there is someone near you who does the same sort of thing. Aso there is something called The Alexanda Technique which helps with sitting, standing and correcting posture.
Sorry I can't be of more help, but I'll do some thinking and get back to you if anything occurs.
How did things go on Monday with Gems? Praying all is as well as it can be.
Much love and prayers
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, just wanted to say glad the cimzia is working for you. I hope the leg problems can be sorted, there has to be someone who knows about this??!! As already said, maybe GP? have heard the Alexander technique is very useful too, may help a little? Glad too that Richard is improving, such a worrying time for all of you. Take care of yourselves, and your lovely family, hope Gemma is ok, lots of love x x  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Jenni so thrilled Cimiza working so well for you,il pray someone comes up trumps re leg also good see your beloved doing well.much lv thinking of you,hydro also sounds like doing alot of good. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi jenni, Im so glad you are keeping really well on the Cimiza. It is great news Richard is going back to work soon too, it will be good for his moral. I hope you continue to improve and given time you will get feeling back in your legs. Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Really pleased you are feeling better Jenni. Hope your balance and leg strength will also return. Also glad that you managed a night away with Richard - moments like that keep us sane! Take care XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
So pleased to hear your news. I always think about you and what you have been going through. Hopefully your bottom half will catch up with your top half soon and you will be able to gain a lot more mobility .
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Very happy to hear how well you're doing - we'll keep praying for your legs...
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Jenni - am so pleased you are seeing some improvement at long last. It must be extremely worrying what's happening to your legs. I just hope the rheumy is right and it will take a bit longer for the drug to have full effect. It's good to know Richard is on the mend as well. Take care.
Julie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
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Hi Jenni,
so glad the cimzia is working, its great to hear some good news at last, am worried about your legs though......
someone should be telling you what, why and some treatment for these lumps surely?
I hope you continue to improve, Ill be praying for you,
Semding hugs,
Ellie x
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