Date: 26.05.2010
From: Fed up
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Subject: Really fed up and Sore!
Hi all, found this site this morning. Hopefully some if not all of you lovely people are having a pain free day today. I have been back and forward to my GP for 2 years now with pain in joints (right hip and knee). Was sent to Rhumetology (cant remember how to spell it sorry) and all tests were clear, although the doctor said it I may have the start of Osteoarthritus. Due to my age (45 now) and blood tests etc they weren't sure. Sent me away to get pain "management" from my own GP. Since then this joint pain has slowly worsened (if thats a word). At times cant get out of bed, walk up stairs, walk round shops without stopping, feeling exhausted. Have been back and forth to my GP (to the point i feel a bit of a fraud as they cant see physical signs. Im sure the receptionist thinks im putting it on! Have been given amnatriptaline and now tramadol both of which make me feel crap.
Was back seeing another GP (locum) who has referred me back to Rhumetology in 2 months time, when I saw the locum my right hand was hot and swollen, knee was tender. I am at my wits end with this pain and feel others dont understand what its like or how much it affects every day things (writing, walking dancing (no longer do this as it practically kills me next day!) At times can hardly drive due to pain. I work full time (shift work and love my job, however getting on and off bus (due to large step off) find it hard and embarrassing asking driver to lower the bus for me. I would appreciate any help or advice from anyone on this site. Oh just for the record my mother has had 2 knee replacements, O/A in her spine and neck and R/A in both hands.
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Date: 26.05.2010
From: Sally
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Subject: Re: Really fed up and Sore!
hello Fed Up, welcome to the forum. You sound like you have been through the mill with the medics. Do you know that you can have seronegative inflammatory arthritis? That means that the rheumatoid factor doesn't show up in your blood but you can have all the symptoms of RA. I'm glad your locum is referring you again to Rheumatologist and I hope that you get some answers. Make sure they know that your mother has RA in both hands. Amitriptyline can be quite good for that sort of pain. I take 20mg at night and find if I take it earlier in the evening it doesn't make me so tired the next day. Do you also know that you can self refer to occupational therapy? They are able to advise and give you some basic aids to help and recommend any other adjustments. Might be worth chatting to them. I know what it is like to have pain and not understand the cause. Many of us here do so you've come to the right place!
Take care.
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Date: 26.05.2010
From: Really fed up
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Subject: Re: Really fed up and Sore!
Hi Sally
Thankyou for your reply, I really appreciate it. Kind of felt no one understands. Will try your tip of taking the Amitriptyline earlier in evening. Here's hoping with the 2nd appointment.
Thanks once again.
Mandy
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Date: 26.05.2010
From: KayJay
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Subject: Re: Really fed up and Sore!
Really fed up - welcome and sorry to hear your story. I was about your age when I was diagnosed with OA of the spine and hips [ now 56 ] .Was referred to a Rheumatologist about 2 years ago and it has been a very frustrating time but in the end [ last March ] was diagnosed with RA. I'm not saying you have this but it does seem to take a hell of a long time before you get a firm diagnosis. Once that's done the specialised meds can start. Mines not been that successful up to now but it does take at least 3 months to kick in, or so I'm told. Sally is right about the Occupational Therapist I rang the Rheumie Nurse up this afternoon just to ask her if I can put a splint on my wrist as it's very painful and she said she will refer me to the hospital OT. So sorry to go on but don't loose faith and you have found a great gang here - always there to help fellow sufferers ;0)
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Date: 27.05.2010
From: minnie
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Subject: Re: Really fed up and Sore!
Hi, I have seronegative Rh. I was not inform that we are intitle to occupational therapy, I am a bit confused , how can this help us.. does any one know
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Date: 27.05.2010
From: louloubelle
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Subject: Re: Really fed up and Sore!
Hi Minnie I saw an occupational therapist earlier on in the year and they gave me wrist splints to wear at night when my wrists were making me too uncomfortable to sleep and some thumb splints to wear when typing. They can also arrange for someone to go to your home or workplace to see if there are any alterations needed and I think they can arrange help to fund things and provide equipment. When I had my hips replaced they came to assess my home and provided me with raised toilet seats, a shoe horn and a grabber (so that I could put me knickers on lol). I think they can also provide you with other equipment, such as pen grips and things to help you turn taps on and off. They certainly provide advice on how to adapt the way you do things. Lou x
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Date: 27.05.2010
From: Sally
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Subject: Re: Really fed up and Sore!
Hi Minnie, I saw an OT when I was in hospital and she said to self refer if I got into trouble. They have given me some equipment - key turners, a mesh basket for cooking and an ergonomic knife. They have also suggested certain changes to my place and given me some useful tips on where to get information etc. I am having my taps changed to lever ones as find them difficult, that kind of thing. Very useful to know you can ring them if you have a flare up and need some advice/equipment. Fed up, glad to be of help. I hope your 2nd appointment is more fruitful! I wouldn't wish RA on anyone but it can be a relief to get a diagnosis, especially if you've been suffering for a while. BTW before I got diagnosed the physio lent me a walking stick to use getting on and off the bus and it made a huge difference. Have you tried that? They told me not to use it for walking just for balance. Let us know how you get on.
tc
xx
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Date: 28.05.2010
From: minnie
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Subject: Re: Really fed up and Sore!
thank you so much , I will look into it..
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