I'm in a bit of a muddle since moving up north as I've had to change Drs etc. when I was diagnosed It was by a rheumatologist who kept an overall interest in my case, and was the one who called the shots on combinations of medication and Physio etc. this was just as well as my GP at the time didn't believe the Fibro existed and didn't like prescribing drugs. My rheumatologist administered steroid injections into SI joints and also hip bursar as I had tendonitis and bursitis, and he referred me to a hip expert for surgery when he realised there was something more than muscular going on in my hip.
Now I've moved 3 hours away, and I've seen a rheumatologist only to rule out immflamatory arthritis and diagnose HMS. She doesn't want to see me again. My GP is pretty impatient and is already sick of me as I've had to see him a few times already (I also suffer from bipolar which is newly diagnosed), and I don't feel like I can raise it with him. I'm not sure who I am supposed to ask for help when the pain becomes unmanageable, or my hip symptoms flare up and require an injection, because in the past I'd have gone directly to my rheumatologist .
I was just wondering which medical professional deals with the pain aspect once FMS is diagnosed. I know we are all on a concoction of medication, so who is it that decides on that?
Thanks
Alex xxx
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I am assuming that when you say you have moved up north you mean north of England. I live in Scotland and although things do differ here from health board to health board I think the overall approach is more similar than that between Scotland and England, though I could be wrong.
I have never seen a rheumatologist as my diagnosis and pain management are all dealt with within my GP practice, as are steroid injections and all blood tests to rule various other factors in or out. It may be worth you asking your GP or, if possible, another GP in the practice for a referral to a pain clinic. I am sure someone more helpful will reply to you shortly. Linda
Hi Alex, At the moment my gp but I have yet to find out what happens when my symptoms change sue
Like you I have just moved. Up until now I was always seen by my ruemy. When I moved up here(Cambridgeshire ), and I saw my new GP, she said she is very knowledgeable about fibro and would look after me and that they rarely refer to a ruemy. I have to say she has been lovely, very understanding and sympathetic to my pain and fatigue. She has tweaked my meds and so far I have every confidence in her.
Could you not see if there is a fibro group in your area, they might be able to let you know how it works in your area and they give great support and a wealth of different experiences.
Good Luck, I do hope you find some answers. This condition is hard enough to live with, without feels the care, support and compassion from your medical team.
Thank you for all of your replies. I'm due to go back to see the dr at the beginning of March so I'm thinking I will write to him before then setting out my concerns, and also book a follow up appt for a couple of days after so that I can see another GP is there is no change xxx
I sincerely hope that you are feeling as well as you can be today? I am so sorry to read that you are suffering in this way since your move north. I personally was sent to a private specialist (which makes me feel a little guilty). They did all the testing and diagnosing etc. I had all sorts undertaken from acupuncture, blood testing, through to massages.
My wife who has Primary Progressive Multiple Sclerosis feels the same about her hospital treatment, as she has seen her consultant once and in-between her appointments has to ring a MS Specialist Nurse to ask about new medications etc, all because she went through the NHS route in hospital. I think this may be the way things are done where we live (in Derbyshire).
I was wondering if there was another GP at your surgery that you could see? Who may be a little more Fibro friendly? If so you may get some better treatment and referrals to other hospital departments? Which I am sure would benefit you greatly.
I also wanted to say how sorry I am that you are suffering with bi-polar disorder, I really hope that this does not affect your Fibro giving you more problems to deal with? I lost my best friend in 2010, and he had suffered with bi-polar disorder all his life, he was a great man and a wonderful friend. So I genuinely understand how you must feel.
Thank you for your message, which was as lovely as ever to receive, and which cheered me up. You have such a way with words, and you sound like your really listening and truly care, which makes me feel a little better no matter what.
I'm so sorry to hear that your wife is poorly too, and struggling to get support from her doctors. Like you, I am in a private healthcare scheme, but my GP seems irritated by me just mentioning a referral at the moment. After the way work treated me, and the number of friends I lost, I am only too aware of not becoming a pest again in trying to get things done, so don't like to ask my GP for the referral in the first place. It makes me feel like a terrible burden on him, I'd have been able to stay where I was, I had an amazing team of doctors then, rheumatologist, 2x psychiatrists, GP, orthopaedic surgeon, Physio, acupuncture, urologist and gastroenterologist. I barely bothered my GP! I really don't know what I should do short of writing to my new GP and explaining the above.
Thank you for your reply which I read feeling a great sense of pain and sorrow. Firstly, I wanted to categorically tell you that you are not a burden or a pest, and I sincerely mean that. You are a patient with a genuine illness and disability. It is your GP that needs retraining to be able to understand the nature of your illness.
What you said about writing to your GP about all of this sounds like a really good idea! I would be tempted to include exactly how he is making you feel as well. I was wondering there was a different GP at your surgery that you could visit?
I sincerely think that you have been placed in an untenable position with your medical care and it needs to be amended to take your needs into account.
I sincerely hope that you are feeling as well as can be today?
hi alex, what area of up north do you refer to ? does your local hospital run a fibro course ?
I was sent one of these - my pain doctor referred me to occupational therapist and she put me forward on the course ? hope you are settling in up north
Hi Belinda, I'm East Manchester area. Even my GP hasn't shown an interest so I'm not sure if they'll be referring me on anywhere?! I'm at a bit of a loss as it was my rheumy who did this last time, but this time they have just confirmed diagnosis and sent me away x
For any one in Dumfriess and Galloway there is a Pain clinic at Dumfriess and they run a six week intensive pain management course as well -it is difficult to get on. I got on managed the first class, then was too ill to go the rest . hoping to be put on the course again, but they may not so I have missed my chance! Shame I would have liked the relaxation and the other bit on how to plan your time.
I'm fairly sure that there's a pain clinic at the hospital in Salford & there is one Liverpool too. They are hard to get on, I went on the intensive course at Liverpool, I made a lot of progress as you have a team of experts around you all the time, there were physiotherapist's, occupational health, medical doctors, a consultant in pain problems & psychotherapist's. It was absolutely fantastic at the time, however, when the course finished & I returned home, it wasn't that long before I had a massive flare-up & I was back to square one! That's only me though, so don't let my experience put you off.
Your doctor is a disgrace, I can't believe he's treating you the way he is! It's 2014, not the dark ages! If you have nice receptionists at the docs, ask them who the nicest doctor's are for problems with pain. They know these doctors better than anyone!
I sincerely hope that you get the treatment you are entitled to, if not, ask for the name of the practice manager & write down all your concerns & the fact that you are being denied the treatment you are entitled to & see where that gets you. My doctors were dragging their feet with my evidence for DLA, so I looked up the rules & time-limits for evidence to be supplied, then I wrote to the practice manager quoting the rules. My evidence was supplied & sent off to DLA within a day!
So good luck with it all, please stand your ground & insist they provide you with the treatment you need.
Love, Tracey xx
Hi Alex
It must be really frustrating for you and I must admit it's one of the reasons I don't like the idea of moving. It took me a very long time to find my GP who cares for his patients and their welfare and I don't the idea of him not being my GP
I found that my Rheumy looked at what combination of meds I was taking and said there's no point messing with them because its what we would have prescribed you. Then he referred me to Hydro and Physio and asked my doctor to refer me to the pain consultant who then echoed what the Rheumy said !! Amongst telling me the severity of my cases the FMS and HMS and both the rheumy and pain consultant discharged me.
I would say that the GP is the one who monitors your pain and if it changes then would re-assess your dosages or decide to refer you appropriately.
It's not easy for you at the moment coping with everything you have gone through either so I'm sending you a huge basket with a variety of fluffies to help soothe the pain and discomfort
xxxsianxxx
• in reply to
Thank you so much for the basket ok fluffies, how generous of you! A fluffy hamper !! I shall look forwards to digging in and spoiling myself xxx
Sorry you are having a bad time with your GP, I understand what you are going through its so frustrating. I had an unhelpful GP, it's wrong when you end up feeling like you are bothering them when really you need help and support. I found a good GP at the same practice so it's worth trying another if you can. Writing to the practice manager is a very good idea too. Hope you get it sorted soon. Take care x x
My GP manages my pain and jigs my meds around when I'm having a huge flare up.My current flare up has so far resulted in me being off work for over 4 months, he has done all he can on the meds side and I have seen some relief but not enough to enable me to live a normal life or return to work. When I saw him at the beginning of this flare up and he signed me off work he referred me to the local hospital pain management service but the referral took nearly 4 months before I saw the consultant, thankfully she was aware of my case and what he'd tried with me as he'd sought advice from her and she put me forward for a lignocaine infusion and put me on the long waiting list for a 10 week pain mgmt course. Had the infusion this morning and I'm hoping it works, if it doesn't then I'm at a loss as to the way forward and will have to make drastic life changes as I would struggle to work in current state as I have problems with self care/getting moving on the majority of days and have weekly days where I am completely bed bound - can't see my employer (or any other)putting up with this. Might be worth seeing if there is a local help group who can tell you what's available and how they've accessed it. Hope you find a way forward soon.gentle hugs x
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!! I shall look forwards to digging in and spoiling myself xxx
which consultant did I see/do the NHS take us for idiots
Pain
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