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Date: 01.02.2010
From: Debs

Subject: Hi I'm new

Hi, my name is Debs I'm 41 yrs old and I'm struggling with some recent news. I found out in 2007 I have osteoarthritis in one of my knees, then just before christmas I had xrays of my feet as I wanted a bunion removed because of the pain it was giving me. I saw the consultant and after an examination he told me I have severe osteoarthritis in both feet! I have since had 2 injections in one foot and insole for my shoes.
I have an appointment to see him again in March, but my hips have been hurting for 2 or 3 years as well and I don't seem able to walk more than about 40 metres without being breathless and have to lean on my husband to be able to walk that far, so I decided to go to my gp, who examined my knees and confirmed it is now in both knees then sent me for xrays to confirm OA in my hips, I get the results on wednesday. I feel like I don't know where to turn or what to do next. My gp said I have to "adapt my lifestyle" and because my feet are so bad I'm not to walk for pleasure any more. If I need stuff from town to ask someone else to get it. I find this hard as I've don't like asking for help. Sorry if this is long and rambling, and if you got this far thank you for reading.
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Date: 01.02.2010
From: KayJay

Subject: Re: Hi I'm new

Hi Debs sorry to hear your news. I've got bunions and ankle Osteo and have to walk with a stick. Have you ever been to see a Rhuematologist ? As these may be able to prescribe something that will slow the damage down perhaps ?
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Date: 01.02.2010
From: Debs

Subject: Re: Hi I'm new

Hi KayJay, I haven't seen a Rheumatologist, how do I find one? Sorry this is all new I don't know who to see or how to find them.
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Date: 01.02.2010
From: bsk

Subject: Re: Hi I'm new

Hi Debs, ask your GP to refer you to one - though it sounds as if you might have seen one already. What sort of consultant did you see? It is very difficult to adapt to doing things differently and takes quite a bit of time I think. I certainly find it hard at times as I have to often forgo doing things. Have you seen an occupational therapist? They might be able to recommnd some adaptations to your home to help you. A rheumatologist can refer you for hydrotherapy and physio, etc. Might help with the pain. Talk to your gp again and see if you can get some more advice and support.
Sally
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Date: 02.02.2010
From: Verity

Subject: Re: Hi I'm new

Hi Debs, Gosh that sounds like an awful lot to take in at once. No wonder youre feeling crap! Doctors are also bloody insensitive. They tend to see the disease and not the person. My consultant is very insensitive. Do you have a good support network around you? ie partner, family? Ive never found any doctors advise talking but god it helps me. When I was younger I was referred to a Psychologist to try and help me to deal with pain. He did relaxation and encouraged me to talk about it (I think they must only do this with kids coz Ive never had anything like this since). Its worth asking GP about counselling or something similar because coming to terms with it in your head can be harder than the pain I think.
Take Care x
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Date: 02.02.2010
From: JILL

Subject: Re: Hi I'm new

Hi debs, the advise the gals have posted to u is goood advise...Verity is right, that is a lot of news to take on all at once...u deffo need to see a rhumatologist, i get feeling u havnt seen one, cant see y your GP hasnt refered U to one, they r the experts in all types of Arthritis...U need that support Now....its tru about re adapting your life, think we have all had to do that, I had to, by giving up work 6 years ago, and still have to adapt what I do, social life is Nil, dont go out unless I have to, U are not alone, so stay with us and we can all help U with tips and what to expect from docs and everything, mind u, others experiences differ so much...it makes a massive diffrence if u have a gr8 GP(if not change) and rhummy, ive been lucky, ive had good support and help from surgeons and the like....some dont have that, and that is unacceptable.....I was once sent to the 'pain clinic', he didnt beleive that the meds i was taking at that time didnt help the pain, LOL he began to even tell me all his bliddy problems, can u belive that? anyway, he sent me to a psycoanalyst(cant spell that) he suggested ways to re adapt my life, but to be honest, I had already done all that, but waht he wantd me to do was listen to nice cosy sweeet melodys(im usre the gang in here will know what I thought about that malarky, heha lol) anyway, didnt go back, becos I knew I was the one that had to accept the changes in my life, still tough, but im now use to the adaptations ive made.......U r entitled to ring the council, ask for the Occupational therapy dept, they send u 0ut a form, ask about your health and probs u r Not coping with, and will visit, they will look around your house, and help with anything like Grab rails in the batroom, shower room, banisters for stairs(two are best) bed riser(ive got one, amazing)...toilet riser, so toilet is higher, all sorts of things...and it is all Free, the products are free i mean.....U r entitled to all that......Plus DLA...Disability Living Alllowance....a benefit we r entitled to....u need to get the form, fill it out, send it off, simple as that.....if U havnt been down taht route, I will help u go thru it with u.....we have sent postings all about it a few months back, if u go back to Novembe and look for heading DLA, will inform u so much ok.....anyway, we r all hear to help u, we all need support in here, but we also like to support and give what we can to ppl that need us.....we also like a giggle too....anyway, take care, hope ive helped a lickle bit

Jill x
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Date: 03.02.2010
From: Debs

Subject: Re: Hi I'm new

Hi all, thanks for all you replys, I saw gp yesterday and asked to be refered to rheumatologist and he said no, its mechanical arthritis not imflammatory, but my husband has suggested I ask consultant when i see him in march anyway. I have two friends who are very supportive and my husband and kids.
Jill, thats a lot of info to take in, not sure the sweet melodys would do much for me except put me to sleep, I am on the waiting list for occupational therapy I phoned up yesterday thay did an over the phone consultation to decide where to put me on the list, but because my husband does so much for me i'm not a very high priority, I thought maybe I should ring once a week to remind them I'm still here, what do you think?.Jill thank you for your offer for DLA,we saw my husbands mental health support worker the other day he suggested i applied for DLA and gave me the details of the organisation who help people with physical disabilitys so that is being sorted my appointment is the 15th feb to fill in the forms. Thank you for reinforcing that I do need it, I keep trying to say I don't but my husband said I need to accept I'm not as mobile as I used to be. I had the diagnosis for my hip xray its not OA is "FAIS" which is a hip impingement syndrome apparantly needing surgery, so am now waiting to see the hip surgeon, I feel like I'm going from bad to worse as gp has also stopped anti depressants and given new ones to start in 7 days. Sorry about the moaning I feel rubbish again today.
Thanks for al you kinds words and support

Debs
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Date: 03.02.2010
From: Jill

Subject: hi newbie here

Debs, first of all, your GP is in the wrong to NOT offer a referal, U r rightfully entitled to a referal to a rhummy!!! im sure others on here will say same....id change my GP, infact I did once, best thing I ever did, others in here have too!....when U see your consultant, tell him what your GP said,he can refer u to see a rhummy OK, insist that u do see one,.....sorry to hear about your Hip Impingemnet, u must be in agony, but once u get that operated on, U will be ok again, not the same I know, but I had two shoulders with impingement at the same time, so I understand the term and the pain, ive also had two hip ops.......one to remove an inflamed Bursa, and the other to remove arthritis and to repair a huge tear in the soft tissue surrounding my hip, within 6 months of each op!!! so know all about hip pain, having sdaid that, pain is pain, no matter where it is in the body, we all understand it........cant get over that gp...He is NOT qualified , in my opinion, to say that its mechanical to u, he isnt a specialist, is he? how wld he know? seriously Debs, how does he know, without MRI etc......even if it is mechanical, so what...u still need to see a rhummy for him to rule out arthrisi, not for the GP to do that.....hope this gives u some support to go back, with your hubby, and demand a referal!! take care ok, and stay with us in here,its a great help when we r low......by the way, regards your anti dep...Y did he decide to change your ones??? did u ask him too?? im on cipralex, but I agreed to change to diff ones, but they made me have panick attacks, so went back to my old ones......please fight for your rights ...goood luck debs,,,,my daughters name by the way xx
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Date: 03.02.2010
From: Jill

Subject: Re: Hi I'm new

Gang...do me a favour please, can U read Debs posts, she is having a terrible time, and seems her GP wont refer her to a rhummy......this isnt right, is it??? we r all entitled to see one, right? know eventually members will reply, but pls can u make a special effort to help Debs, shes in a bad way at the mo, and needs some support from the forum.......and I hope I didnt give wrong advice to Debs...... thanks gang xx
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Date: 03.02.2010
From: Jill PLS READ IMMED

Subject: Re: Hi I'm new

Bump Up to top, dont want this falling behind!J
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Date: 03.02.2010
From: Verity

Subject: Re: Hi I'm new

What difference does it make if its mechanical or inflammatory? Surely arthritis is arthritis and needs to be treated as soon as possible. Oh god he sounds like a proper jerk. DEFINATELY see a different GP! It may help you stop worry so much : )
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Date: 03.02.2010
From: Jill

Subject: Re: Hi I'm new

Thanks for replying bk to quik Verity......

Debs, Verity knows more than anyone, shes been thru the mill most of her life with Artha....hope helps Debs x
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Date: 03.02.2010
From: Angela

Subject: Re: Hi I'm new

Hiya Debs I am 53 ,and got diagnosed with RA two years ago.
Jill and the others are right, your GP is in the wrong you need far more support than what you are getting.
I remember feeling in such despair just like you when I was first diagnosed, but the more research I have done on it, plus all the support from everyone on here has given me so much confidence in dealing with the GP and specialist.
The best advice I got was "BE FIRM" with them, and it worked.
Please try it.
Take Care xx
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Date: 04.02.2010
From: Debs

Subject: Re: Hi I'm new

I have decided to wait till I see consultant in 4 weeks to ask for a rhummy or is that to long to wait? Jill, did your ops help with the pain? I don't know yet if surgeon will actually operate cos I have a history of blood clots going to my lungs. Also gp cahnged anti d's cos i'm fed up of sleeping all the time i get 8 hrs at night then fall asleep for at least 2 hrs during the day.
I start fitbay today in a warm swimming pool so I'm hoping that might help with the hip pain, doubt it will do anything for my feet, but who knows?.
Thank you all so much for your help and support, I've never had this much help before from people I don't know, you are all great.
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Date: 04.02.2010
From: valh:-)

Subject: Re: Hi I'm new

hi debs sorry late getting to this but been off it i started out with oa in hands and feet with bit of inflimation lol well things were going from bad to worse i was able to do less and less and flare ups (heat in joints aching real bad)well went to doc she asked me if i wanted to go see rhummy i had spent ages getting corage to ask her lol. but since going yet more bloods done and more meds but things are much better so change your gp and get the extra help sure they can do something and never heard of some one being told not to exercise you need to keep muscles strong to help joints even if you go swimming do not sit and do nothing that plain silly you will get weak do not over do things listen to your body but get help
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Date: 04.02.2010
From: Kat

Subject: Re: Hi I'm new

Yes, your GP needs to refer you Debs. What a terrible doctor not to! A rheumatologist will have a much better understanding of the issues than your GP and be able to help more and refer you to clinics and occupational therapists etc. Sounds like your GP is lazy to me!

When you walk do you feel like you are walking with pebbles in your shoes? I've got RA and some of the bones in my feet point downwards to the soles. I find wearing trainers with cushioned soles or those memory foam inserts helps somewhat. also having someone give you a good foot rub with deep heat often helps. I hope everything goes well for you.
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Date: 05.02.2010
From: suzie

Subject: Re: Hi I'm new

Hi guys and gals, I'm new too! Just thought I'd introduce myself. Like you I have a poblem with arthritis in my feet and am over the moon to find this forum with like minded people. I went to the podiatrist with an ingrowing toe nail and she informed me that not only was one leg shorter than the other, but I had arthritis in my feet. I am 35 and my mother has recently also had a knee replacement (she is 59 but has been suffering for years). I have insoles (one slightly raised) and have to go back to the podiatrist at the end of February. I'm sure you'll be hearing alot from me over the next few weeks, sorry to go on a bit - all the best - Suzie PS: It's freezing here - I hope it's warmer where you are!
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Date: 05.02.2010
From: Verity

Subject: Re: Hi I'm new

Hi Suzie! Good to hear from you! I also have arthritis in my feet and have only just discovered the joys of decent supportive footwear! Although they still hurt its nowhere near as bad as before (I used to wear skate trainers and it was like walking on cardboard lol)
Where abouts are you? Im in N.Wales : )
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Date: 05.02.2010
From: JILL

Subject: Re: Hi I'm new

Suzie Big welcome...u have found a gr8 forum, in hre we wupport each other, give general tips, and we screammmmmmmmm, larf, giggle etc.....we also try and keep people informed on subjects like DLA, Occupational Therapist ppl that help supply grab rails in the home etc....I also have arthritis in feet, but touch wood they have been good to me last few months...but by god, when they hurt, it was a living nitemare...tc Jill x
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Date: 05.02.2010
From: Jill

Subject: Re: Hi I'm new

Hi Debs, yes, they did, altho my first spine op took me 8 months b4 i could cope....shoulders took 4 mo nths(normal time apparently)my hips, well I still have probs, but not as much pain as b4 the ops, so all in all, yes corrective surgery for me is the way to go.....Ps I wldnt wait 4 weeeks, id go change my gp Monday, they will give u a total health check up(all surgeries do that when u first join)U r entitled to join a new surgery, U dont have to give a reason Y either...your choice, good luck x
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Date: 06.02.2010
From: Debs

Subject: Re: Hi I'm new

Hi Kat, yes my feet hurt as if pebbles are in my shoes, the insoles the podiatrist gave me have made a difference and buying proper fitting boots instead of trainers has made some difference too. Thanks Jill there are other doctors in the practise I belong to so I will try one of them for a referal first. I went to the pool on thursday and did some small squats adn steps in the pool but now my hips are burning. I will definitly ask for a foot rub,from hubby, I've never had one (how sad is that!).Thanks for all your advice its great having this forum and knowing there are others who can help and I'm not on my own. I don't know if this will help many of you but Phill, my hubby, bought a grabber from the 98p shop in town for me the other day and it is brilliant, it can pick up the post off the floor.
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Date: 07.02.2010
From: Jill

Subject: Re: Hi I'm new

blimey I make sure I get a foot rub everynight from my fella lol.....hes so bored of doing it now hehaheaha....he even massages my hands....love it....better than S** lololol
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Date: 08.02.2010
From: suzie

Subject: Re: Hi I'm new

Hi Verity - Thanks for your comment! I'm in Glasgow and it's still snowing!! I tried wearing a pair of heels on Saturday night and lasted about half an hour - not happy about having to wear trainers all the time with the insoles but after Saturday, I couldn't even have the weight of the bed clothes on my big toe!! Somethings got to give though - I have a cupboard full of gorgeous heels!!!
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Date: 08.02.2010
From: suzie

Subject: Re: Hi I'm new

Hi Jill, thanks for the reply - finding everything really interesting on here - I don't think my mum even knows abut any help she can get - she got her knee replaced a few months ago and her employers are trying to sack her as she is unfit for work (even though she is 59 and should be retiring shortly!!). Thanks again for all the info and hope you are good!!
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Date: 08.02.2010
From: suzie

Subject: Re: Hi I'm new

Hi Debs, I'm new and finding everything very interesting here, I have arth in my feet and wear insoles too from the podiatrist which I have to say make a helluva big difference, don't think it being cold helps though - presently my street is all iced up, that heated pool sounds great!! Hope you are feeling a wee bit better - all the best....
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Date: 08.02.2010
From: Jill

Subject: Re: Hi I'm new

Hi Suzie, regards your Mum and er employers, thatis disgusting, she Mut go see a solicitor, they cant do that, ya mum had a knee replacement, she hasnt been off due to general sickness, I wld fight them, surely they cant do that.....anyone in here know about these things....also the employers know that she will eventually get over the operation and be as good as new.....U really Must go see someone that can support your mum leagally, this isnt right.....Jill
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Date: 08.02.2010
From: julie

Subject: Re: Hi I'm new

Hi i'm new to this forum i have rheumatoid arthritis was diadnosed 5 years ago, i ge it in my feet, jaw, hips,shoulder and othe joints i have a brilliant RA nurse at the hospital Debs i hope you get something sorted very soon.
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Date: 08.02.2010
From: Jill

Subject: Re: Hi I'm new

Welcome Julie....the forum is brill, stick with us, we help everyone, and all your experiences will help us too, so look forward to your posts, btw how does your R.A. affect u on a day to day basis? do u work ? take care Jill
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Date: 08.02.2010
From: Verity

Subject: Re: Hi I'm new

Hi Julie

I have ra in my jaw too. Havent come across many other ppl that have to be honest! Its bloody 'orrible! Cant bite into apples n stuff and when it does flare up I get terrible headaches and a really tense jaw (you know, like when youre anxious and you grind your teeth).

Good to hear you have a decent nurse! Havent heard many sentences like that on here for a while!!
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Date: 08.02.2010
From: julie

Subject: Re: Hi I'm new

Hi Jill and Verity,I work in retail i have been off sick for over 2 years now, not had much support from my employers. I was once asked to get off my fat arse when was sat at a till and get some work done infront of a lot of customers,there have been other incidents i have spoken to a ot and they are disgusted at the way i have been treated,its still an ongoing matter as to wether they can do anything to get me back into work but i will let you know how it goes. Verity i know how you feel i would love to be able to yawn and seeing my dentist is sometimes impossible and i've not heard of many people with it in there jaw.
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Date: 08.02.2010
From: Verity

Subject: Re: Hi I'm new

I used to work at sainsburys and the manager at the time was a total pig. He had a go at me once in front of everyone because I said I couldnt stack the alcohol shelves. It totally shocked me and ended up in tears. I did get an apology after I made an official complaint though.
I cant believe they said that to you julie! Thats horrendous. Have you thought about doing a desk job? (if you can find one that is!) I manage to work full time and wouldnt be able to if I did anything else.
I dread that feeling you get just before you yawn coz I know im about to get serious pain and theres absolutley nothing you can do about it! Has anyone ever tried to not yawn?!?! lol

Julie, Im due to go to the dentist as I havent been for years and have been concerned with not being able to open my mouth wide. Was your dentist understanding??
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Date: 09.02.2010
From: julie

Subject: Re: Hi I'm new

Yes I'm lucky my dentist is very understanding, I'm going to see my rheumatology nurse later on today, I had a course of rituximab at the begining od December then got a cold which then became a chest infection I've had several courses of antibiotics and its just about gone. Its left me very drained and I'm flaring up all the time I just hope the treatment will kick in soon.
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Date: 10.02.2010
From: J

Subject: Re: Hi I'm new

read recently that its common to have it in the lower part of the jaw, part n parcel of this Insidious disease...:(
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Date: 10.02.2010
From: julie

Subject: Re: Hi I'm new

I should have gone to dentist today but i had to cancel because my jaw wont open wide,but i've just had a steriod injection so should feel better soon.
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