Had my pain clinic appointment

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Had my pain clinic appointment

Postby Zia2014 » Mon Nov 03, 2014 2:38 pm

So...I saw a nurse specialist, she was lovely. Shame we always have to rush through these appointments though, and she spent a good 5 minutes reading through my 2 page list of symptoms/meds/medical history :oops: and then another 5 minutes trying to work out why my GP had sent two referrals, one of which was out of date and said I had CFS on it!!

Anyway...................... :mrgreen:

I had a list of things I wanted to cover, and got the chance to do that. She has referred me for 6 Tai Chi sessions, and then I can continue after if they seem good. She has referred me to hydrotherapy, I have to see a physio first but am hopeful that will help as I love swimming. I get 121 sessions for that. The physio will also advise me re. walking sticks, as the holding them with my right hand which is painful might be awkward.

She has suggested that as Gabapentin doesn't seem to be doing the job anymore, I could try upping the dose or as an alternative, duloxetine (?).

She said they have a pain management course, but as I am going on this Long Term Conditions course starting Wed they will probably overlap and cover the same stuff, so she'll wait til my follow up (after I've had Tai Chi, so god knows how long a wait) and then refer me onto their course if I still need it.

She said I could try having massage, and do pilates/yoga if I wanted, no reason not to.

She thought I had no weight to lose til I told her I had 3 stone!!!!

I got a bit upset talking about (lack of) friends, so she gave me a counselling leaflet and I can self refer. No idea what the wait is, but they recommend it. They do have a psychologist on staff but I wasn't offered that service, so will see how I feel when I have my follow up and ask then if I need to.

She seemed nice and it was good to finally (!) talk to someone about what I can do, as opposed to just getting a diagnosis. Ironically my partner was far more concerned about the latter, whereas I want to know what I can do to help myself.

How does that appointment sound to you guys?
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Re: Had my pain clinic appointment

Postby FluppyPuffy » Mon Nov 03, 2014 3:40 pm

I think all~in~all it was a jolly decent one. You've got access to some therapies to try out, you've been given some good advice and suggestions, and most importantly, you were given the chance to talk some things thru.

I was a tad surprised at the suggestion of Duloxetine instead of Gabapentin as they are very different meds, and can be taken alongside each other. If increasing the Gabapentin dosage doesn't help, the logical next step tends to be Pregabalin. A very similar and sister med to Gabapentin, often described as being the cleaned~up and more effective of the 2. Duloxetine is an anti~d which some say was designed for FM as there have been a lot of improvements seen in FMers who have taken it. Like all things tho, it doesn't suit everyone, so talking to your GP about the options is where to go next.

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Re: Had my pain clinic appointment

Postby Zia2014 » Mon Nov 03, 2014 4:17 pm

Thanks FP. She seemed fixated on Amit/Nort/Duloxetine as the only good meds (are they all in the same 'family' or something?), she didn't seem to think much of Gabapentin. She's only recommended it. I think I'll stick to Gaba for a bit longer, as I've just increased the dose to 6 a day from 3 a day, as I'm in so much more pain from the holiday and it's getting worse. Hopefully once I've started the course and got some ideas on self management I might be able to decrease that.

Have looked into the counselling, and you get an initial phone or live appointment within 10 working days!!! Took almost a year last time I was referred!
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Re: Had my pain clinic appointment

Postby Zia2014 » Mon Nov 03, 2014 5:09 pm

Oh I forgot, she also offered me Lidocaine infused (I guess on a drip) - has anyone had this?

She did say it only works for 30% of people there, and even then for about 2 months max. I asked if it was a painkiller and she said not really, but then said something I can't remember! (I did take notes for most of it)
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Re: Had my pain clinic appointment

Postby dotty lotty » Mon Nov 03, 2014 5:36 pm

You seem to have been given quite a few options and hope at least some are helpful and waiting list not tooooo long :teddy-bear:
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Re: Had my pain clinic appointment

Postby dazzleship » Mon Nov 03, 2014 9:29 pm

hi Zia sounds like you had a really good appointment there glad it went well :-)
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Re: Had my pain clinic appointment

Postby ..:: lisa ::.. » Tue Nov 04, 2014 10:41 am

Sounds like a positive appointment and they are so rare these days :roll:

Would love to hear if the tai chi and hydrotherapy helps, my cbt therapist suggested hydro but gp is being a pain about it!
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Re: Had my pain clinic appointment

Postby Zia2014 » Tue Nov 04, 2014 2:48 pm

Thanks guys, yes I think I got quite a lot from it. I wish I had been offered an appointment with the clinical psychologist for CBT, and I wish they had more resources in the department like a physio (like the CFS clinic does) so I didn't have to wait, but you can't have everything ;-)

I will indeed Lisa, why is your GP being a pain? Surely it's worth a try?
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Re: Had my pain clinic appointment

Postby lemurin » Tue Nov 11, 2014 10:00 am

That sounds like a good appointment to me. You actually had someone listen to you and give you some positive suggestions as to how you can help manage FMS.

I've recently had a different infusion (i think we have discussed this in my thread? your user name looks familiar xD) and it is a drip put into a cannula in your hand. With mine I was sedated as the drug they gave me can give some pretty awful visions (I saw some, it was horrible).

I am on pregablin and I find it's the tablet that works for me, I take 6 a day. I've tried all the others that have been mentioned and didn't get on with them, but that is just me. I found the tablets that were originally anti depressants reacted more with me than others, one made me go temporarily blind!

I have tried yoga (one class, going again though!) and just from that one class I have felt benefits, to begin with I was achey (this was before the infusion by the way) but after the first day I felt a lot better and my lower back was easier to move and what not.
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Re: Had my pain clinic appointment

Postby Queenie_70 » Tue Nov 11, 2014 10:13 am

Hi Zia2014,

Hydrotherapy sounds amazing. When I worked in a PT office we had our own pool which we used. Now I find that heat is a good friend on bad days, it relaxes the muscles, helps the joints, and in general just makes me feel a heck of a lot better. I hope that you find it useful and I would love to hear how all the different techniques have worked for you. I am so nervous about trying anything new in case the pain increases.

The duloxatine is an anti depressant. I am taking it for my bi-polar disorder, but I am currently waiting for an appointment with a psychiatrist for a full med check as the migraines I suffer each day are possibly caused by it. I guess there is a causal link, so if you have a tendency towards migraines, discuss this before starting the meds just in case it exacerbates them. I have been on them since November 2009, so I figure I am due to have everything checked anyway, but I just don't like the migraines, and if it is just a medicine change that will get rid of them, then I am all for it. I have heard that it helps with fibro pain, but it has never seemed to make a difference for me. I think everyone metabolizes medication differently, so definitely give them a go and I hope that it is a positive change.

xx
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Re: Had my pain clinic appointment

Postby Zia2014 » Tue Nov 11, 2014 1:41 pm

lemurin wrote:I've recently had a different infusion (i think we have discussed this in my thread? your user name looks familiar xD) and it is a drip put into a cannula in your hand. With mine I was sedated as the drug they gave me can give some pretty awful visions (I saw some, it was horrible).

I am on pregablin and I find it's the tablet that works for me, I take 6 a day. I've tried all the others that have been mentioned and didn't get on with them, but that is just me. I found the tablets that were originally anti depressants reacted more with me than others, one made me go temporarily blind!.


I think that was me yes :mrgreen:

Ooh blind is not good :yikes:

Queenie_70 wrote: I hope that you find it useful and I would love to hear how all the different techniques have worked for you. I am so nervous about trying anything new in case the pain increases.

The duloxatine is an anti depressant. I am taking it for my bi-polar disorder, but I am currently waiting for an appointment with a psychiatrist for a full med check as the migraines I suffer each day are possibly caused by it. I guess there is a causal link, so if you have a tendency towards migraines, discuss this before starting the meds just in case it exacerbates them. I have been on them since November 2009, so I figure I am due to have everything checked anyway, but I just don't like the migraines, and if it is just a medicine change that will get rid of them, then I am all for it. I have heard that it helps with fibro pain, but it has never seemed to make a difference for me. I think everyone metabolizes medication differently, so definitely give them a go and I hope that it is a positive change.

xx


I'll let you know trust me! :lol: I'm probably doing it the wrong way, by trying everything at the same time, but that's just how it's fallen.

I luckily don't usually get migraines. I'm sticking with gabapentin for the time being but I tried Amit/Nort which are also ADs, so I'm worried I might get similar side effects. I couldn't get on with them at all.
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