I went to so the pain team and spoke to a nice lady but she sat back in her chair and told me, she will not be able to get rid of my pain ever and she would also not be able to make me pain free.
Not the best news to hear I must admit . She said I should see a phyiso , to which I told her I was referred for that in Nov 2012 and I still have not heard from them. Also I could have some acupuncture on my back, for which they get good results shame most of my unbearable pain is in my hips and she said there was nothing more she could do about that. And that was the whole appointment , I get another appointment some time in November, can't wait. Does any one else see the pain team, is this really all that is available ?
I really hope they is something better out there
Caroline xx
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Carolinee71
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I see them they are very good they have now offered me a liducaine infusjion i havnt had it yet
Hey caroline
Something doesn't seem right about any of that I think I'd be pushing my gp for another appointment plus you could go online and do some research into possible treatments that are used for fibro, there's a section on here somewhere too with useful links and advice. What pain meds do you take? Have you been offered to go on the pain management program? Hydotherapy? sorry! just chucking ideas out- it happens sometimes, sorry LOL.
I hate the fact we've got to tell them what's wrong with us and then how to treat it and I hope you get some answers and treatments soon
Hi, I haven't been to a pain management or has it been offered. I was meant to have physio and hydrotherapy but so far that hasn't either. I need to try and find out what is available in my area as all I get is pain med's.
I take MST, Oramorph ,Pregabalin and a handful of tablets for high blood pressure and a unhappy heart! Also take a few tablets for severe depression and anxiety
I have just pushed and got a second opinion from my GP to see a different rheumatology doctor as my last one said," you have fibromyalgia read this book and we will not give you anymore appointments. " I asked about swollen joints and legs and arms that change colour at will. His answer was " No comment". I left after that.
My new appoint for rheumatology is at the end of September so fingers crossed with that one
Just a thought but have you looked at the side affects of your anti depressants and your oramorph .I used to take both Oramorph and anti-deressants untill I read that they can cause musle pain...stopped taking both and the pain reduced consideably. But i was left with a cronic pain in my left hip...this went undiagnosed for 4 years...until it got so bad I had to pay to see a private pain specialist, with just one question he "Can you lift your left leg over your right knee".....he diagnosed Pyriformous Syndrome.....3 injections and hydro therapy have helped but the pain is still present but at a much lower level.......He advised me to take Nortriptyline at night which helps with my sleep and I take only paracetamol every 4 hours and Ibrufen gel.....to take the edge of the pain.I have now been advised to use a TENS machine and he has arranged further Hydro therapy and some light stretching excersises ....which help but I think I have accepted now that this pain is going to be with me for some time.....I think acceptance can in it's self help as when you fight it ...you tense up and the pain becomes worse....hope you soon find some releif as I know how debilatating pain can be.....(Please excuse any spelling mistakes.....it wa never my best subject)
Well I think she is correct in the fact that it will never go
I expect you know that, good days and not so good and
I have been to the pain clinic only for them to say they cannot help me but tweak my meds. He asked about Physio, they cant help as my pain is widespread, and to go back when I can make my mind up what part of my body I want Physio on?????????
Hi I had just over 3 weeks physio, found it very good but with the heat over the last few weeks it knocked me out. I have not been for a while because my balance has not been so good.
Hi, I have just had 6 weeks of hydrotherapy and 4 of physio, very gentle stretching exercises which get reduced on bad days and increased on good but to be done EVERY day regardless. The hydrotherapy was the best and I am now on a waiting list for a hot pool in my area. We had our bath taken out as we couldnt get into or out of it. The physio said they didn't recommend accupuncture (even tho the consultant had recommended) as they couldnt target all the areas, but did say she would remind my doctor to refer me to the pain clinic. I dont expect much from them except maybe a tweek of my meds. She is right about never being able to totally get rid of the pain, its more about coping with the pain, accepting that your way of life has changed and adapting how you do things according to how you feel and then possibly adjusting your meds. You could ask for CBT if you haven't had it, most of us take years to come to terms with Fibro and all the rubbish it throws at you, it is all about pacing yourself and gentle exercise along with your meds, but do bear in mind if your meds don't suit, aggravate your body or make you spaced out then there are alternatives to each type, what suits one doesn't necessarily suit someone else. Push your GP to change your meds if they are not right. If you dont ask you dont get and the GP etc thinks that you are coping, its only when you say you are not and why you are not that they then look at what you are on. If you have pain in your hips ask your doctor if its possible to have an xray to rule out Arthritis. I'm afraid everything from GP, Consultant , DWP, Pain Clinic etc seems to be an uphill battle with them all, but I figure its my body, if I don't like what they are doing or saying I do complain at the time and ask for a review within 3 months, most will accept that as reasonable. Keep asking your GP each time you go.
Hi lcm27, just wondering what area you are in to get hydrotherapy? Have been told there's nothing in the Midlands where I am, so although my pain clinic nurse said it would be great - they'd taken the only one out of the only place she knew that I could have been referred to! (Driving home from hols in Cornwall - there was a vet's surgery that was advertising a new hydrotherapy suite that was opening soon!!!) I've found the pain clinic nurses to be really understanding of what it's like to suffer long-term pain, & I've found mine to have more empathy than the consultant! They gave me a TENS machine to use & have offered me a local anaesthetic infusion that can help target all over body pain areas which fibro sufferers get. So, as well as my physio there at the same, 'cottage hospital', I'm getting better treatment there than at the new-fangled, Super Duper hospital recently built!
Hi, I'm just south of Bedford and attend Bedford Hospital. Last time I saw the consultant she said no new meds, try alternative therapies. Referred me to the hospital hydro therapy, physio, acupuncture and pain management. Got the hydro and physio at the hospital, the physio said acupuncture didnt work successfully for fibros and was referring me back to gp for pain management. Seeing the gp tomorrow so I'll chase up the pain management, also checking up on how I'm coping on this ReQuip (Dopamine) for restless legs, which has been good so far, not had one episode in over a month and before used to get it at least 3-4 times a week, plus it makes me drowsy so seem to be dropping off to sleep fairly quickly. My local leisure centre told me not to go to the local pool as it was too cold and we need about 35 degree water. There are a couple of private places which I've been recommended but you go with the exercises the hydro peeps have given you. Ask your pain people if they know of well heated pools in your area (usually belong to schools if not private). I've just done a search for hydrotherapy pools in bedfordshire and its bought up a few, one at Wyboston Lakes which is on the A1 in North Beds if this is any good, depends where you live in the Midlands. I also searched for swimming pools in my town and came up with one I didn't know which is very small and also heated to a good temp. So could be worth ringing around once you find the pools on the net. Don't give up, it was fantastic, I was much more mobile after (although shattered on the day) and have now signed up to one in bedford on a monday night which is supervised in a 35 degree pool only 30 mins but hey, if it works! Keep plugging away, its taken me years to get this far!!! Lynn xx
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