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The UKFibromyalgia Forums • View topic - Hospital appt and Pain Clinic
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Hospital appt and Pain Clinic

PostPosted: Wed Jun 20, 2012 8:36 am
by Katblack
I went to see my Spinal Consultant yesterday, the good news is that my spine is stable and I won't need any further surgery for the foreseeable future, which is a huge relief, 2 major spinal surgeries are enough for anyone, and although a lot of my back pain is down to wear and tear of my discs there is no reason they can find for the huge amounts of pain that I am in in other parts of my body, which means it must be something else ie FM, the 'bone' Dr can't really deal with this though so I have an appointment with the Pain Clinic on Friday in London, if anyone has any suggestions of questions I could/should ask I would be most grateful.

I will update this thread on Friday.

Re: Hospital appt and Pain Clinic

PostPosted: Wed Jun 20, 2012 5:08 pm
by denys
Great to hear you dont need any more surgery Kat, and :goodluck1: with clinic

Re: Hospital appt and Pain Clinic

PostPosted: Fri Jun 22, 2012 11:15 pm
by Katblack
Well today was a complete disaster :(

Don't really know where to start but I have been discharged from the Pain Clinic as apparently I shouldn't have been told I have FM as it is very rare for anyone to have 'true' FM, then he basically in a roundabout way told me I was a Hypochondriac that worries too much about my 'aches and pains', am lazy and that if I did more exercise I wouldn't be in pain, not to bother with Physio, that I should go swimming (and when I said I can't deal with the cold water in the pool he said he thought that 'people from Essex were tougher') and that I should start weaning myself off all my painkillers 'as there is no point in taking them if they don't work'.
He also rambled on about nerves and different things triggering different feelings in the body like mint = cold, chili peppers = hot

All my challenges were discarded explained away, I have been told I have to carry on through the pain and he will refer me for a 'live in' 3 week pain management course which won't help with the actual pain but teach me how to deal with it.

I went to the appt with my Dad who is wonderful but won't interfere and doesn't know anything about FM, I barely spoke during the whole 2.5 hour journey home as I spent all of it holding back tears and have spent the last 3-4 hours in bed.
TBH I never wanted to get out again and have gone through all the possible ways of killing myself since the end of the appt as the thought of living in pain like this for the rest of my life is not an option.
I don't want to speak to anyone, I feel like a total fraud and waste of time and space, I also feel like the last 6 months has been pointless. I even went to see my Gp this morning to tell him how depressed I am (before the pain clinic appt) and all he said was 'wait for the talking therapy appt to come through' it's been 6 months already, no idea how much longer I am supposed to wait.

Re: Hospital appt and Pain Clinic

PostPosted: Sat Jun 23, 2012 11:25 am
by TATT
Kat honey, I can only imagine what you are going through. Coupled with the anger and frustration you may be feeling. Please don't take what "they" say to heart.

You know what you suffer from day to day, hour to hour. You know it's not in your head. You know your not lazy. Unfortunately for us we have a condition that scientifically/medically that can't show on tests. But we know what we feel. These small minded people will be ashamed of thereselves shortly as there are many documents showing that FM is a neurological illness ( not psychological)

Just remember that tommorrow might be a better day. You have to hang on. I believe you and so do thousands of others. Change your doctors if you have to and recheck your meds. I am furious that someone could add to your pain. Shame on them.

I try to imagine what it was like years ago where their was no forum or indeed a doctor in the uk that believed in fm or me/cfs. Those poor people had to suffer silently and often in shame. You are not lazy you are a woman in pain and I support you as I will need your support someday down the line.

Be strong and don't let the F.....s get you down.

Sending loads of love and strength to you xxxxxxxxxxx

Re: Hospital appt and Pain Clinic

PostPosted: Sat Jun 23, 2012 3:17 pm
by masonsbarms
hi kat, have followed your link to here from your other post,

i an so sorry that you have been treated this way it is totaly wrong,

you have been suffering a long time and now the people paid to help you have sent you to such a bad place ,

i genuinly worry when i read how far down people have got as i have said to you before.

please tell someone that you have been thinking of killing yourself.

i have experienced suiside as i think i told you.

do not let anyone make you feel like this

you are a strrong worthy person who is just asking for help.

if you cant talk to someone face to face ring the samaritans you realy need help

i am willing to listen any time but please please talk to someone.
i have felt sorry formyself today i am not saying this is what you are doing i am trying to say what you are going through has put
my minor hicups into perspective.

remember you are worthy of all the help you need
take care xx

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 1:54 pm
by fibrostar
Hi Kat
I hope you are feeling better today and realise that although you might not believe it at the moment but there are people out there who can help. You need to change you dr right away and make a complaint about how you have been treated, we all of us at some stage in our diagnoses have been told "its all in your head" but you need to keep fighting.
There is a fibro friendly dr list somewhere, maybe someone on this forum will know where you can get it ? And maybe there is a support group near you that you can go to so that you don't feel so alone?
Take care

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 3:08 pm
by denys
Hi Kat so sorry you had to go through such a rotten appointment, as the others have said please dont take it to heart and I agree with the others change your doc. We are here ready to throw that rope down and help you to climb out of the hole just shout. Wishing you some happy thoughts and sending gentle :hugs: :hugs: :hugs: :flowers: :flowers:

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 4:39 pm
by Katblack
I just don't know what to think anymore :(

The last 6 months I have spent coming to terms with having FM and to some degree it was a relief to have an explanation for the pain and all the other weird stuff that goes on with me, I really thought I was getting somewhere. I had built up so much hope for this appointment and then have had 'the rug pulled from under me' with the Dr saying no you dont have FM, now I feel like I have been abandoned, I feel like I don't belong here or on my other forum I am an active member of.

My depression had been taking a downward spiral anyway and Fridays appt sent me over the edge, I have shut myself off from everyone, not answering phone, texts and Facebook. Some good friends came round last night out of the blue to try and cheer me up which did help a bit, but I just don't know how I will face anyone, I feel ashamed/embarrassed, no one except people on here have any idea just how low I felt on fri, can't tell hubby as he doesn't understand and gets angry with me if I mention suicide.

I just don't know what to do now, feel so lost and don't have any fight left in me

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 4:49 pm
by FluppyPuffy
Kat, please try to see a different GP and try to tell them how all this is affecting you :blowkiss: :blowkiss: If you feel that you can't actually talk about things, print up what you have posted on here and give to the doc to read. Hopefully they will then see how you truly are and start sorting something out to help you.

Has your talking therapies referral been chased up at all?? If not, and with how you are now, it might be an idea for it to be done, at least then you might have a bit of an idea of how long you will have to wait.

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 7:40 pm
by MelanieB
Hi Kat

I think the way you have been treated by the medical profession is absolutely disgraceful. Nobody should get away with saying or implying such things and making you feel this way. I noticed in one of your posts that you mentioned you were from Essex, so I have put some links below the the Patient's Advisory Liaison Service's in different areas of Essex. You must contact them and tell them what has happened to you and they may be able to help you find a more sympathetic doctor.

Please stay strong and remember that everybody here believe in you and understand exactly how you feel - you are not alone at all. Keep in contact with your friends as much as you can as they can be an enourmous source of strength when you don't have any. I honestly do not know where I would be without my friends. Your friends will beleive you because they are your friends, they probably just don't understand the illness as I imagine it is difficult to do unless you suffer with FM.

http://www.westessexpct.nhs.uk/contactus/pals.php
http://www.midessex.nhs.uk/Its-Your-NHS ... ints/PALS/
http://www.see.nhs.uk/content.asp?page_id=130
http://www.meht.nhs.uk/patients-and-vis ... omplaints/

If none of these are the correct one I'm sure they will be able to help point you in the right direction.

Try and keep a smile on your face. :-D

MelanieB

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 8:37 pm
by wiccahawk
Hi Kat,

I too found my way here from your other post. I know, like so many of us here, the total dispare you'll feeling right now due to the incompetence of a Dr who is still living in the dark ages.

Please please please find yourself a new GP and or push for more referals. I don't know if any of your local hospitals have one but I found our local hospital had a Disability Rehabilitation Medicine clinic which although as my G.P tried to tell me was for those with M.S, was of great help to me. I had to argue for the referal to be sent but a G.P cannot refuse you without just cause. Phone your local council and request a visit from Social Services and Occupational Therapy and don't take no for an answer from anyone. My home is now being adapted mainly due to the fact that once O.T could see my needs were genuine they could'nt refuse me.

Don't give up Kat, take a rest, step back and go for it. One Dr may have told you FM is a load of horse manure but so is his opinion. I've lost count of the times I've been put down like that. I've been so down I've nearly done it but somehow I made it through, just as you will. B*****ks to him!

I know we don't know one another Kat, nor have we ever spoken on this forum before but I feel for you. Good luck in the future and please don't give in to narrow minded Dr's who think that their medical qualifications make them demi-gods.

Love n Light to you,
Steve

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 9:33 pm
by shazq
Sending you some big :hugs: :hugs: :flowers: we are all here to help support you Kat.

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 11:15 pm
by tonydin
hi kat :hugs: who dx fm in the first place , id say u have had it brought on by years of liveing with spinal pain . same as i have .

i thought the pain clinic a awste of time befor rummy dx fm , and you should forget you ever when there , i think id have ended up getting arrested for g b h ,, now i do lots of work and exercise and it dont make the pain and stiffness and numbness go away ,, nothing stops the pain it cant because its being generated in the brain not the bit taht hurts . its as bad and real as any other pain though.

i cant belive they told you that ,, must have trained with my misses as she dont belive it exists either

come on smile for me
tony

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 11:33 pm
by Katblack
Thank you everyone, I didn't mean to upset anyone with my other post, I wasn't thinking straight at the time.

How do I go about getting an appt with a rhumy? Do I go to my Gp?

The Gp I see is ok, I think he believes in FM, he is quite young and has been pretty helpful so far, but I don't know what he will say once he gets the letter from the Pain Clinic. It was the Dr at the Pain Clinic who said he doesn't believe in Fm therefore I don't have it, which is what is making me so confused, do I or don't I have FM??? I don't know :(
All I know is I still hurt all over, my neck is still killing me, I still can't think straight or formulate words in a sentence but now I'm very grumpy as well.

Weirdly it was a Locum Dr at the SAME Pain Clinic who diagnosed me with FM in the first place!
This is all so f*****up

I don't feel I can go back to my Gp yet as I only saw him on Friday morning....

Re: Hospital appt and Pain Clinic

PostPosted: Sun Jun 24, 2012 11:48 pm
by tonydin
hello kat your gp has to refer to rummy ,, but they really only dx fm then as there is bo treatment they can give a gp cant they hand you back to a gp ,, but rummys have seen more of this condition than most others so tend to understand it more ,,remember it used to be called chronic rummitisum or fibrositas a few years ago

im in agony from doing yo much but it dont get to me so much now i ub=nderstand and axxept it foe what it apperes to be

take care
tony