Rheumy visit.: Good afternoon everyone. I have been to... - NRAS

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Rheumy visit.

sylvi profile image
24 Replies

Good afternoon everyone. I have been to the rheumy clinic this morning. My Ra is at crp. 9 which means that the ra is not causing my problems. It is Fibro. which is kicking my arse. All the test results are in. I have thickening in my fingers and wrists. I have some degeneration in my neck which makes sense of why it is so painful. My duloxotine has been increased from 30 mgs.to 60 mgs. I have also got some pastiles for my mouth and some gel as well for it. As the consultant wasn't there when i was there nothing much else could be done until he sees the results. My rheumy nurse is going to write it up and put it in his pigeon hole or if she gets to him beforehand she will ( her words) "put it under his nose" i won't know what he intends to do with me. So here i am still in pain,and hopeful of something else being done. He wanted me to try the Alexander Technique which i would happily try,but as it is not on the National health i cannot afford to go private,as hubby is on a pension and i am unemployed and reliant on benefits. I broke my heart when i was in there as i am fed up with the pain and being unable to do anything. Something which a lot of you can understand very well. Anyway hugs to you all with love from me.xxxx

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sylvi profile image
sylvi
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24 Replies
Someonesmother profile image
Someonesmother

Oh Sylvi I am so sorry you are hurting and have had such a brush off. So you have been seen by a nurse but not a rheumy and the nurse has decided this is what is happening? Is that right? If that is the case the nurse is not qualified to make a diagnosis like that. Wait and hear from the rheumy before you give up. What is the Alexander technique BTW I have never heard of it?

sylvi profile image
sylvi in reply toSomeonesmother

She is well qualified,she also had all the results in front of her as well.Not much else is being done until the consultant has seen them. I have heard of it,but as i can't afford it,it is not relevant.It is a form of exercises i believe.xxxx

Someonesmother profile image
Someonesmother in reply tosylvi

I would still wait for the rheumy. I get quite fed up with people who think they know it telling me stuff that they really shouldn't be. Sorry I just get cranky at the unneeded worry they cause.

I will have to look it up I have never heard if it. I do wonder too when you are in that much pain how people expect you to exercise. ridiculous. I read a recent study about the stupidity of forcing people with Fibro to exercise and how it increases pain and symptoms.

sylvi profile image
sylvi in reply toSomeonesmother

I am supposed to go swimming,but when getting dressed takes so much out of me how do they expect me to exercise. I like swimming,but i can't find the energy to go. I try to stay as active as i can,which means i over do it.xxxx

Someonesmother profile image
Someonesmother in reply tosylvi

I am of the belief that if it takes that much out of you just to get ready and go and then kill yourself trying to exercise I just don;t do it. I have little enough energy now, it is ridiculous to expect people to exercise. I would like to see how they cope feeling like we do and getting out there and exercising. I refuse to.

sylvi profile image
sylvi in reply toSomeonesmother

I quite agree with you.xx

Someonesmother profile image
Someonesmother in reply tosylvi

I found this it may help and cost free

alexandertechnique.com/

sylvi profile image
sylvi in reply toSomeonesmother

Interesting thank you.xxxx

Someonesmother profile image
Someonesmother in reply tosylvi

Here is the other article I talked about

news.ufl.edu/archive/2015/0...

sylvi profile image
sylvi in reply toSomeonesmother

Thank you,the cost of 8 lessons is £88,i don't have that sort of money. I am on benefits and hubby is retired so we don't have the odd £88 to throw about.xxx

Someonesmother profile image
Someonesmother in reply tosylvi

yes too prohibitive. So frustrating.

sylvi profile image
sylvi in reply toSomeonesmother

Yes it is,these people don't realise that most of us with these diseases are also on benefits and just don't have the money for something like this.xxx

Someonesmother profile image
Someonesmother in reply tosylvi

Yes true I am still working but only just. I do know what it is like to be so poor though I had a period when my kids were little and my husband left and a child with caner and I couldn't work. It is very very very tough indeed.

alibromo profile image
alibromo

Hi Sylvi. Sorry to hear you are suffering so much. Hope you get the answers you want, its not fare to be left in pain & feeling like nobody cares. Xx Alison

sylvi profile image
sylvi in reply toalibromo

You get used to it to be honest,some days are better than others.xxx

Caza profile image
Caza

Sending you much love & hugs xx

helixhelix profile image
helixhelix

I feel for you as it's so depressing to get your hopes up and then get nothing from an appointment. Can you talk to you GP about getting some NHS physio for your neck? Most physio's should know about the Alexander technique and may be able to suggest some exercises you can do at home that will help relieve the pressure. Or some of the voluntary groups have sessions for "seniors" (!) that are only £1 or so. I do pilates and find that it helps keep flexibility and have eased my shoulders and back.

sylvi profile image
sylvi in reply tohelixhelix

I find it hard just to get dressed let alone do some exercise. A lot of the keep fit groups round here are very clicky if you know what i mean.xxx

allanah profile image
allanah

My husband dies Alexander technique , easy to do but work the muscles particularly the neck to ease pain. I agree ask the physio at the hospital for advice. Xx

Ps I would hate to have fibro . Awful illness xxxxx

Hi Sylvi, The Alexander Technique is not an exercise, it is more a re-education of the way we use our whole selves, mind and body. It was effective for me and I practise it daily by lying down, there is NO effort needed. Where in the country are you? There are teachers all over and classes to. The saying health is wealth is so true I remain inconsolable with grief having lost years of my life thanks to a culture/ system that enlarged my problems. The A.T gave me back mastery over myself. I'm still scared about things but I feel healthier than I've felt in a v. long time. I can't recommend it enough. Depending on where you are I can recommend an excellent teacher.

sylvi profile image
sylvi in reply to

I am in the Midlands,but i can't afford the cost i am afraid. I would love to try it,but hubby is a oap and we are reliant on his money as i am on benefits. Why does something that does us good costs so much.xxx

in reply tosylvi

Ohk, try stat.org.uk/ to find local teachers/ classes. You could ask if they can offer a discount. Do select carefully, and be guided by your instincts as it is hands on work. I think it best I don't get started on the wasteful use of resources in this country.

miss profile image
miss

Hugs to you hun . truly hope you get some help. You seem to be suffering for some while. Hope you get some help from rhuemy soon xxxx

sylvi profile image
sylvi in reply tomiss

Thank you darling.xxxxxx

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