feeling very low again. Few months ago was told I had fibromyalgia as well as RD.
I was told will be having appointments for massage and therapy for cognitive behaviour to change the way feel about pain.
How demoralising is that. I feel like a nothing. We cope with pain anyway We learn to live with it. Now this government is telling us it is all in the mind and we can be cured. Can only assume this is for those that are on neccessary benefits so they can be bashed back to work or die with the stress of the fear of sanctions etc. Diminish the illness.
whats the point going? Cannot drive. will need to a bus (woops cutbacks now means there is onlt one at 6:50 am) A walk to the train station. An 8- 20 min train journey. Then another bus to the hospital.
Have a massage, physio or a good talking to, then reverse the above to get home. Apart from bus to where I live as none, so a taxi.
Yep. Mind over matter. Cured.
What a total WASTE of NHS funds. Find excuses to kill us off cos that'll save money.
I feel like a nothing. I stopped taking all my tablets. What's the point? There's nothing wrong with me.
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jell
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Don't stop the medication! But what a counterproductive idea to offer you massage but with a long journey for the effects to wear off. Can't do much more than say I feel for you xxx
When had problems getting for treatment I told my gp and I was allowed to go by medicar I know what you are saying I would love to give that a try a massage is very expensive try not to feel too bad about the choice you make its your body your treatment plan talk to someone about your medications as Cathie says don't stop your medications
You obviously feel very low. have you thought about giving the NRAS helpline a ring? You might find it useful to talk through the options with someone.
But CBT doesn't mean that the doctors things there's nothing wrong with you, or that it's all in your head. Try to look at it as a different form of treatment. Sometimes with chronic pain there comes a point were painkillers don't help anymore, and you need to find ways to reset the pain responses.
I think of CBT like this. Imagine if you kept bashing your thumb with a hammer on exactly the same place every day. It would hurt more and more, and would never get a chance to heal and would become so painful that would never stop hurting and a paracetamol would be useless. But if you could be shown how to bash other bits of you, so nowhere got endlessly bashed then you'd still feel some pain - but more manageable than the excruciating pain of your poor bashed thumb. And a pain that might respond again to painkillers.
I am sorry to hear you feel this way we have some very good information on our website about physiotherapy and how this can help you manage your pain:nras.org.uk/the-role-of-the... .
We also have a section on how CBT can be effective in helping you change your perspective to pain . We have alot of people that speak to us on the helpline that have found it very effective: nras.org.uk/depression-and-... .
It would not be advisable to stop your medication but these other therapies should work alongside the medications.
Please ring our Helpline if you would like to discuss this further on : 0800 298 7650.
I know how you feel. I was told 6 months ago that I shouldn't still have pain and it was likely to be fibromyalgia. I read up about it and wept for 4 days. Like you I felt that the pain of RD had been totally denied by this new diagnosis and they thought it was all in my head. I felt worthless.
I didn't go for CDT or pain management but I did make some changes. I decided I did still have RD and stayed on my medication. I decided not to continue to do my freelance job - it meant a drop in income and I loved it but others were depending on me and I couldn't depend on being well enough. I do exercises and I walk outside - very slowly to start with but I now walk with a friend and we laugh. I take 10mg amitriptyline at night and sleep better. Over time I've got more involved with things, do more, see more people. My RD got more active and I'm now on another DMARD which has helped a lot. I don't think about fibromyalgia too much.
It's not in your head. I wish things go better for you. Take your meds you still have RA
Maybe those suggestions wouldn't feel so dismissive of your pain if they came from an attitude of caring, and trying to help you, rather than from 'the system' which seems to have its own agenda nowadays
Don't give up on yourself. It's hard to be on your own side sometimes, especially when feeling low, but even more important in these times, to care for yourself.
Maybe some good can come of it, and if you can get transport help to get there, the medicar idea as June church mentioned.
Worth a try, the CBT. If it helps, great, if not, what have you lost?
I an quite new to RD, but am slowly finding my own things that help, relaxation, short walks when I can, diverting hobbies etc.
Of course the pain is in your head - that's where we feel pain. But that isn't to say that we can't modify how we respond to the pain. Someone described the brain like a radio - lots of different stations but you can only pay full attention to one at a time. If you use distraction or other techniques, it can help you to cope better with the pain. So thinking about something else while having a blood test can help to reduce the pain felt. Doing something absorbing like reading a good book or watching a film can make you forget about some of the pain for a while.
But it is unrealistic to expect you to have a long and difficult journey to access this help, so feed that back.
Hi, Jell, shouldn't stop taking your pain medication just because the prats at he hospital have gone "airey-fairey" on you. There is one very important judge of the pain you are in and that is you, so take your meds! The medical people get these spells of daft ideas like "natural child birth being best for every woman," from time to time, and we all know it is to save money. I just love talking to my 33 year old son on the phone and not understanding a word he says because of his speech defect due to his cerebral palsy from his cut price delivery! Just go along with it then tell them you are worse afterwards, then they will have to do something else. To be honest, I often think us people with chronic problems like RA are just used to keep the hospital people in a job. We use a voluntary car scheme in the rural area where we live for hospital appointments. Your local council or social services might know of one in your area. It's not because the hospital people don't believe you, it financial. Hope you feel a bit better soon.
The thing that worries me most about what you have said is the journey you are required to do in order to get that treatment. As someone else has suggested, see if you can get some kind of transport organised so you don't have the public transport nightmare that is going to undo most of the good that the appointments will do. I get what you feel about airy fairy treatments, but if it were me, I'd probably try them just on the off chance that something might help even just a little, as long as it was made easy for me to get to them. That kind of journey definitely wouldn't be easy for me.
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Private physio assessment - his comment what are the hospital playing at!
New medication. And denied for treatment?!?!
Properties of Treatments for RA
Has anyone started on a new treatment regime during lockdown?
