a step in the right direction

This week I was re seen by a physiotherapist after being referred by foot doctor who didnt know how to help me. I felt that they woudnt be able to do much as the last time I was seen by one I was discharged as they didnt know how to help as they felt my issues where to complex. I was exspecting the same thing this time but felt as it was free it was best to go as I was afraid if i didnt the nhs might use is against me. However this time it went really well. The doctor I was seen listened to everything I had to say offering imput where he could. He also by explained a lot of things to me and I learnt things about myself which was helpful. He told me that the reason why my feet point out in a V shape/ have not much arch was not to do with my feet but instead due to the fact that I have stiff hips which I didnt know about. He also made me stand on my tip toes which brought my arch back which also proved my issues didn't lie in my feet as I have working muscles there. He said my stiff hips would explain why I have issues with my knees. Though the thing was no one before had told me I had stiff hips and not knowing the difference between a stiff and lose one I had just assumed mine where always normal as l didnt know any different. So it was helpful knowing that even if just adds another issue to my list of issues.

The doctor told me that there was to point seeing me again as he didnt think he could offer me help that wouldnt make me worse. However he did say that he would speak to whoever he could in order to help me. so he is going to write to my preferred gp to get them to help me as well as speak to my foot doctor as he was at the hospital at the time of appointment. he also said he would contact rheumatology department and when I said I might not be in the system having not been too see them in months he said he would make sure I get back in the system as It sounds like the help i need/ want.

The doctor then gave me a few hints and tips to help even if it wasnt much. He suggested i do yoga or pilates as that would be helpful with my especially with my hips. He also said I need to pace the amount of walking i do as I would go from doing a small amount too doing much which would exsplain why i always got ill quicker on walking holidays. However He did say that the way I did walking wouldn't explain all of my issues but would be a small part of the problem. So im going to slowly build that up so next time I have a walking holiday I hopefully dont get as ill.

So despite the fact that he couldnt do much it was nice to see someone who was going to do all he could to make sure I was seen by someone who does. Though it makes me sad that doctors who cant do much to help are trying the best they can to make sure I get the right help.

Anyways after the appointment I went over too see the rheumatology department too see if i was still in the system. Well guess what I was despite not having not been seen since may. So when I asked if i could see someone else in the clinic as I didn't like the doctor I had been seen by as he refused to help me; they offered my an appointment with a different doctor for January 9th. So hopefully with the help of the physiotherapist i'll finally get the help i need.

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  • All sounds a good start!!!! Hope it continues.

  • thanks, i hope so too.

  • Well Done seanto! I know all too well just how hard it can be to get these sort of complex issues investigated, understood and treated effectively. I've had a lifetime of this kind of prob, and only finally figured out the whole pie chart of underlying causes a few years ago in my 50s thanks to a brilliant prof orthotics surgeon. So, I have a feeling you're working a lot faster than I did πŸ˜‰

    I forget: do you have a hypermobility syndrome? Ehlers danlos hypermobility is an important part of my causal pie chart re this stuff

    Wishing you every ounce of possible good luck

    Please keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • thanks, Im sorry you had to deal with your issues for so long before you got a cause. I feel like im finaly getting there but i've had to go round a in a few circles just to get there. New rheumatology doctor that I will be seeing will be the third one I would have so, hopefully three times lucky.

    I dont have eds. I've only ever broken one bone in my life which was one of my fingers after trapping it in a car door. It has never healed but the nhs say as it clauses no issues its not worth treating. However some of my toes are hyper flexible as I can bend them in more than one place.

  • Thanks...well, in people like us there are multiple causes for our symptomatology. This is why I like to look at each body system as having a causal Pie Chart: each wedge of the pie relates to each of the underlying causes. Eg the causal pie chart of my feet & hands is made up of these wedges:

    infant onset lupus gets a big wedge

    Vascular ehlers danlos ditto

    Early onset Sjogrens ditto

    Primary Immunodeficiency less big

    Osteoporosis bigger than PID's wedge

    Looking at my multisystem issues via pie charts helps me to put up with having to spend so much time consulting so many different experts in order to fully figure out treatments that really do increase my quality of life

    My gosh: you've got me going!

    XOXO

  • im sorry for getting you going. lol I like look at the different parts my health as wedges as well. I like to treat each problem I have on its own, so I dont get lost or confused but at the same time I know each part links into something bigger that also needs treating. This is why i keep going and keep fighting as I know the longer the wrapper that covers all my wedges goes un treated the more issues I'll have with my wedges. in a sense you could say I am semi afraid that one day my wrapper will burst before someones had a chance to have a proper look at it.

  • πŸ˜† I feel as if I know exactly what you mean πŸ‘πŸ‘πŸ‘πŸ‘πŸ˜†

  • Good for you I am glad you was adament to get a second opinion not many people do because they cannot be bothered with all the hassle but I say it pays if you stick to your guns and keep demanding you need support and eventually you get one not from the Doctor but at least the Rheumatologist if you can get one like mine is really loverly a fantastic man and a very good listener which is what we need with this illness because it affects every part of our anatomy which is so frustrating and at times hard to deal with on your own whether you have family, friends or not take care and I wish you all the best in life and keep strong if you possibly can. :)

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