pain clinic update/ fibro

minky67

Hi All,sorry ive not been posting much as ive had a lot to get my head round just lately.im sure you'll all understand why by the end of this post.
i went for my pain clinic appointment last weds & the consultant was brillant.went through all the pain,tiredness etc.
Then she examined me,boy she pressed on my muscles & i about hit the roof. :shock: Fibromyalgia was the diagnoses :shock: so ive got that on top of the spondylosis,OA,costochrondris & prolapsed disc(wonderful).
The diagnosed explains all the chronic tiredness,the feeling of constantly having a cold,hot/burning muscles,widespread muscle pain & various unexplained infections plus the migrianes & sickness.
Then she goes onto explain i have IBS too. :shock:
im now waiting for the gp to receive the letter from her explaining my change of medication & new dx.
she's changed meds too;Tramadol,a trail of gabapentin if thats no good then to go onto pregabalin.im to carry on with the amptripyline,oramorph & diclofenics.plus a new drug for the IBS.
its alot to take in,hence me not being about much.
ive brought a Tens machine(she recommended this too)& thats helping a little with the neck pain,then she wants me to do pilates,(gentle stretching excersise)she also wants me to read a book on CBT called overcoming cronic pain,so most of my treatment will be self help plus the change of medication.
at least now i know what was causing all my problems & im at last getting some help.
so if your not getting the help from gp or rhmy keep pushing them & being a nuisance as i have.
Sorry for the long post.
luv debs

woodbon

Hi, You've got a lot of things to cope with, but at least now you know what they are and can get the right help. I hope that helps you a bit, because when you don't have a proper diagnosis, your mind can think up all sorts of things, or at least thats what I do! :roll: I am sorry though, it must be horrible to have so much to put up with. I hope now, you will get some treatment to help with the symptoms and start to feel much better. Sounds like the doctor at the pain clinic really gave you a proper examinaiton. I don't know about you, but I find that I seem to be lots of different parts. Its like the idea of putting the pieces together is not the way they do things, so I see lots of different people, from different depts. and they deal with bits and bobs without looking at the whole picture. Is that just me, or have you noticed that. The Pain Clinic are much better at looking at the big picture and seeing what needs to be done. Sorry, I'm going on a bit, so I'll stop 'rambling'. Glad you've got some answers, love Sue

elnafinn

Hi Debs

My goodness you do have a lot to contend with at this time - no wonder you have given the forum a miss. Thank you for letting us know and with such detail because this could well help someone else.

I must say the consultant you saw was indeed brilliant. She obviously knows what she is doing and is interested in her job and helping patients.

I really do hope that you begin to feel a little better soon. Let's hope your gp receives this letter within a few days so things can get moving.

Good for you for persevering and letting others know that results can happen as a result of keeping on, keeping on, although why we have to do this is anyone's guess.

Look after yourself and hope you have the time and inclination to post more soon.

Luv
Elna x

skezier

Hi Debs,

Its always hard to have another thing on top of the things you knew you had but at least you were able to get them to take it seriously and actually have a look at what is going on with you. Its wrong you had to fight for it all but good you have as now with the tablet changes you should find you have less pain and be less tired.

Well done for hanging in there and no wonder you have needed some time to get it all processed. Its a lot to take in but now things should get better for you once the letter has been sorted and the drugs changed. I really hope you will get some benefits quickly and well done for making them see you. My sister swears by the CBT systems and I hope you will find it works for you as well. Luv and ((( )))'s Cris x

angel1

Well done Debs, you`ve certainly proved that it pays to stand up and be counted.

I hope the diagnosis you received will help to ease your mind a little. At the end of the day though, despite all the big labels, it`s all pain, and has to be lived with.

I`m a great believer in self help, and CBT is a very effective form of therapy. Together with Pilates, and a change in your meds, hopefully you will see some improvement. I truly hope so.........Ange.

annie_mial

Hi, I also saw the Rheumy last week with similar problems, but with me the jury's still out considering the verdict.
None of the tests so far have been conclusive (although I think it's Fibro, but willing to be wrong and probably will be).
Part of the problem is that I'm on Warfarin, so I've got to stop that slowly and after about 3 weeks off, have all the tests repeated, plus other tests like muscle conductor tests(?) that I've never heard of!
I'm seeing her again mid-December and although the pain and discomfort stays the same I feel better in myself just knowing things are at least moving on. I had to wait months for the appointment (don't we all seem to) which was a referral as I've got osteoporosis on top of everything else. I've got the chronic version of Polymyalgia Rheumatica and have been on steroids for 7 years; she wants me off those by the Spring; so will probably be started on MXT at the December appointment.
Life's just lots of smiles, ain't it?
Luv
Annie

minky67

Hi,thank you for all your replies.
I hope the post can be helpful too for any1 thats not getting the help they need,as Elna says keep on,keeping on & dont give up.

Annie i do hope its not Fibro,but at least your getting the tests etc to find out whats going on with you.
I had the tender point pressure tests & my consultant said i had all the classic symptoms for a chronic Fibro sufferer.
so now i can get started on the right route with meds & self help.
again im sorry for not being around as much as i should have.

take care all.
luv debs

annie_mial

Hi, Debs
Rheumy tried to do those point tests with me, but a lot of my muscles are so sore anyway with the PMR that we couldn't tell what was what.
Anyway, I do feel that things are moving on and after so long in limbo, it's a great feeling.
All the best with your meds and treatments.
Luv
Annie

chris7

Debs

So sorry to read this, you have been coping with such a lot and now another diagnosis to deal with. Glad that you at least feel you are getting the help you need now and I reallly hope you start to feel better soon. I know those who can offer practical support and genuine empathy on here will do so. For me as a relative novice with this arther business, I am again sadly realising that the medical profession is not the infallible organisation I had believed it to be, and am slowly learning to make a nuisance of myself. :? Thank you for reinforcing that message.
Take care of yourself. Hope you feel able to keep posting, you do such a good job in the cafe.
Chris xx

minky67

Hi thank you so much.if all ive done is get the message across to keep fighting for the right treatment then i have achieved something at least.

im feeling a bit more possitive now & youve all helped my do that.
like i always say'' Tiggers always bounce back''.
i do get down with all this but i have my OH & all you lovely people to help me thought it all.

Chris i'll be back in the cafe & on full duties again real soon.Promise.

if you get knocked back,take a few days for yourself then get back up & start again.not easy i know.
take care all.
luv debs

joyful164

Hi Minky67
Have been following your postings about your pain clinic appointment. I was discharged by the pain clinic - it seemeda very futile experience for me, probably because they thought I was doing all the right things. Even though I explained most of my probs, they did not discuss all of them, I was thoroughly dismissed.
Ended up with an OT coming to see me to discuss 'my stick'. and that was that. All the requests I made for investigation into my hip, neck, everything were just swept under the carpet so to speak.

I'm glad you came away very positive. I am seeing my Rheumy on the 5th November with the same old list. Lets see if he will get me referred again or at least, investigate.
joy

minky67

Hi Joy,sorry your appointment didnt go well,& youve been discharged.
the only thing ive been left confused with is when im gonna see consultant about my neck jabs.She did say that i have to see him as these injections are under xray & that was that.No appointment or follow up yet.

could you ask rhmy to send you to seperate consultants for your hips etc.Especially as the pain clinic have discharged you,you cant just be left.

i will keep you all informed & i hope its a help to some of you.
take care all.
luv debs

frogmorton

Hi Debs!
I found it!
Sounds like you did well to be so persistent. If not you would still be sufferuiing and none the wiser.
Alos very interesting to read lots of others experiences of pain clincs and fibro too.
Tigger I hope you are bouncing back!
Good luck with the new meds and don't forget to let everyone know how you get on
Love
Toni xx

minky67

Hi Toni,thanks i will let you know how i get on with the new meds.
just waiting for the letter to go to the gps then i can start.

im sure i can wait for another week after all this will be over 2 yrs of appointments to get this far.So there is hope for every1.
luv debs

woodbon

The pain clinic told me that my neck MRI was quite good, but the spinal physio he sent me to found some problems. Sometimes I feel I am going round in circles. :roll: I'm so sorry you've got such a lot of pain. Love Sue

minky67

Hi Sue,ive often felt like i was chasing my own tail.
Then i wanted to give up at 1 point,but thats not the way to go.
hope you can get sorted too.
I rang the surgery today to see if letter from my consulant was there(no) so im just gonna book appointment,show him the meds sheets that ive got & he wont doubt me on what ive been told,as he wanted to put me on the Gabapentin.he just needed comfirmation that it was what i needed.if i explain what she said gp will give it me.im not gonna lie to him.

my OH is now complaining as im up & down all night with the pain,even though im on 50mg of amptripyline :shock:
pain & toilet. :roll:
if i can just get some releif from the neck pain & sleep i could about cope with the rest of my joints.
debs