Where to go from here...

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Where to go from here...

Postby laurafae » Wed Mar 14, 2012 11:08 pm

Heya

Just wondering what I can do now. I've not had the best care by my local nhs services, it's been fine but very limited. (A lady on here has confirmed that it's been the same for her with the local hospitals here so it's not just me!)

My gp sent me to rheumy who told me it was fibro, but kinda only half told me. The gp took it as a diagnosis but left me with the rheumy team - Who sent me to a hand specialist because they were allll obsessed with the fact that before my fibro became worse (After having my son) that my primary pain was in my hands and wrists (which is really hasn't been since the fm became worse) - The hand lady basically told me she couldn't help and sent me on to a pain management team.

I saw a... ok forgotten the word, someone who deals primarily with the psychological side of illness (English degree you fail me) - She was very nice and was able to confirm that my diagnosis was definitely fm (I'm worried about the multiple diagnosis, though, because if I ever come to needing a medical for benefits purposes, my information is spread very thinly and the dr who did the pressure point test thingy only half told me it was fm despite me having pain in all the points but one, which is well over the diagnosis limit)

Anyway, I digress. The dr I saw put me on to a mindfulness course. Which was lovely and relaxing, but I'm not sure how much help it would have given me with the fm, other than helping me deal with relaxation more, which would have been good. I had to quit when my mum got diagnosed with cancer and could no longer give me child care for my son.

So now I'm just seeing the gp, who is great, but limited on knowledge. All that's happening is we're trying different combinations of pain relief, but he's wanting to see me less and less. Is there something else I can do? If I'm not having the mindfulness course then the OT's and pain management people don't seem to want to know... is that really all they can offer me?! Feeling at a loose end because I'm not the kind of person who likes not knowing what's going to happen. Also I am desperate to think that there has to be something a little more out there that I can do!

Thanks in advance, if anyone has any ideas
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Re: Where to go from here...

Postby denys » Wed Mar 14, 2012 11:39 pm

sorry Laura, I've just answered your other post about flares and given you a load of useless advice as you have already tried it :crazy: :crazy: :crazy: :roll: :roll: :roll: :roll: Anyway, unfortuantely what you are experiencing isnt unique even in different areas of the country, knowledge of FM IS limited as noone can agree what causes it OR how to treat it :roll: :roll: :roll:

Most sufferers are sent for physiotherapy which has mixed reviews so it may be worth asking, hydrotherapy which does seem to offer lots of people some relief but its important that the water is warm (hence hydrotherapy) as cold water can make things worse :yikes: :yikes: :yikes: so if your local pool is warm then that might be an idea, if not :dunno:

I would say that the majority of us have been told to exercise more and again some people find this helps though most of us dont :lol: I go with the pacing theory, listen to your body and stop any task regularly to take plenty of breaks, we get through things eventually it just takes us a little longer than those without FM
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Re: Where to go from here...

Postby e777 » Wed Mar 14, 2012 11:41 pm

Hi there,

For me, one of the best (but sometimes scariest) things I've done is to try to educate myself as much as possible about this condition. There's some really good information on this site, but the NHS site is also quite a good starting point.

What I have learned from that is that even the most specialised of specialists know very little for sure about this condition. They know that there is a processing fault in the central nervous system, but don't know why this happens or how to fix it.

In terms of treatment, there is no one medication that works well for everyone. It is a real process of trial and error to find a drug or combination of medication that works for you. A lot of the medications used are slow acting so some need to be taken for a few months to see if there is any positive benefit. Your gp can as easily go through this trial and error process as the specialist. There is a EULAR protocol as a guideline for doctors on this.

Because finding a drug that works might take some time, then it is worth looking at what else you can do for yourself and your treatment.
I keep a pain record, which gives me a sense of when the pain gets better or worse and what things I've been doing before that to build up a picture of what my body is able to do and still keep pain levels tolerable.

One of the most recurrent suggestions in all the literature is to exercise. I do think this is really important. It hasn't actually lowered my pain levels, but it helps to keep me sane. I also think it is a good idea to keep my body as fit and healthy as possible so that I don't develop other conditions other than fibro. My main tip with regard to this is to start pretty gently and slowly build it up.
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Re: Where to go from here...

Postby laurafae » Thu Mar 15, 2012 12:11 am

Thank you both :-)

I do try to exercise when I can, but what I can do is so limited compared to what I could do a couple of years ago (I was in very good shape back then when my fm was so much milder) - I tend to take my little boy for walks, only short walks around the block, but I am often suffering for days afterwards.

I may look in to the hydrotherapy idea, but I have a bit of an issue with water (It's a weird one but I've a shark phobia that actually seems to be triggered by any body of water bigger than a bath tub, if I can't reach the sides of the water I'm in I think there might be a shark... yes I have issues, lol)

As for the idea of research, I am in agreement with you there. I've been reading and reading for months now. That's why I've decided to come on here, I have a good idea of the sort of knowledge base that's out there, but there's no real substitute to talking to real people and finding what their personal experiences are.

I guess I shall have to bug my gp, again, next week - Poor man was hoping not to have to see me until May, but after contemplating a+e because I feared I was close to being impacted, I've had to stop taking dihydrocodeine for now as it was causing havoc with my insides. Luckily I still have my tramadol and that does make each day more bearable, but the extra help from the dihydrocodeine is hard to not have. Nothing, yet, has taken away all of the pain, and I don't expect that anything will, but the tramadol and dhc was the best combo to date xxx
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Re: Where to go from here...

Postby 2steps » Thu Mar 15, 2012 11:10 am

Hi Laurafae,

The hospital in Glos has a Hydrotherapy pool and it's fab. Lots of physios to help you, better than my GP, was not diagnosed with fibro at the time but I felt that the physios had more idea about my problem than anyone else.
You need to be referred there.

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Re: Where to go from here...

Postby laurafae » Thu Mar 15, 2012 10:40 pm

Are you local then, 2steps?

My problem with glos is that I can't drive. I live 2 miles from town so can only get there if I get a lift, and glos is a 45 min bus ride and as I'm sure you all know, buses hurt!

Maybe, once my son and I are ready to move out, we should consider going closer to Glos, but then I'd be away from my family.

Chelt really hasn't been great, but glos is so inaccessible
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Re: Where to go from here...

Postby FluppyPuffy » Thu Mar 15, 2012 10:53 pm

Some health trusts run a medicar type service for getting patients to clinics, hospitals appts etc, so if hydro was available to you, but a bit further afield, if there is something similar in your area, it could gibe you a way of getting to sessions.
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Re: Where to go from here...

Postby 2steps » Fri Mar 16, 2012 8:50 am

Yeah, def in your area.

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Re: Where to go from here...

Postby laurafae » Fri Mar 16, 2012 4:34 pm

Oh I've never heard of that. I may look in to it. If the pool was small enough I might be able to manage without a panic attack too heh
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