Thank you all who replied to me about what to expect from Pain Clinic.
The Consultant I saw kept referring to my pain as a symptom from depression. He kept going on & on about depression. When I tried to tell him my depression is under control & its the pain I'm concerned about he kept talking over me.
He told me its something I need to learn to come to terms with & there is no medicine can help.
He is now referring me to a Pain Management Course twice a week for 5 weeks. So from this am I meant to expect that Fibro will have gone.
I feel disgusted, humiliated & like no-one at all is listening to me.
Bought more Thermo Heat Wraps when out & I'm now going to put one on, take the pain relief I have, Tramadol & Paracetamol & go to bed.
Thoroughly upset again. So pee'd off I feel I want to punch something.
Why is it so hard to find someone who understands.
I had wrote notes about my pain & how it makes me feel along with the mefication I take & he asked if he could have them as it would save him filling forms out!!
I go to the pain clinic and i have seven years of banging my head against the wall with regards doctors and this condition. When he says its depression, some of us can be depressed due to the condition and been in pain and not been able to sleep but it not just the depression that would be causing the pain.
When he says that no medicine will help, for some of us medicine makes no difference as with this condition we have a high pain threshold.
I have taken medicine and it has not helped at all, it s like taking no medicine at all.
The doctor should of changed your medicine for you, if what your taking is not helping. He could of put your name forward for acupunture, i have had this last week, you get 6 weeks, one session a week and it helped me with the pain. I have major problems with sleeping and get pain across the shoulders and down the arms with tingling and pins and needles, have problems with neck.
Have trapped nerve in spine and compression on it. I had in April a epidural in neck for pain relief and it has had me in more pain, not helped with the pain at all, if anything the pain has got worse. I have attended a pain management course for eight weeks, once a week and i found it did help as your meeting other people with chronic pain. I found meeting other people who were in pain did help just speaking and meeting them. They give you advise and tips on ways of dealing with the pain.
You could contact Pals at the hospital and complain about the service and also maybe ring the pain clinic today and ask to speak to who ever in charge of the doctors at the pain clinic and raise your concerns as in the past when i was not happy with the service i received i spoke to them and the matter was resolved.
hi jackie so sorry that you are in so much pain i have had fibro for 4 years its agony i was atttacked in my home and soon after the pain started ..i was sent to a pain clinic they tried acupuncture on me but it hurt like hell and i bled never again ,i cant take any meds as i get an alergic reaction .so i just have to put up with the pain ,i joined facebook there are lots of people like us that have fibro and they help me a lot ,when i have my bad days .i cant remember when i had a good day ,ihave just been diagnosed with haglunds deformaty in my feet its nerve damage to my feet so i cant walk for the pain ,if you wat to chat i am here i know what u mean that you want to punce something me 2 .soft hugs ,sheila
Hi Jackie sorry things did not go as you expected it is really hard when this happens. I do hope that you find the pain management course is helpful and as others have said that you meet some others in your position. Take care Sue xx
Ugh. It is the problem with some pain clinics that they think Fibro is just like chronic lower back pain, for which there is no real treatment, when treatment is so so important.
The lifestyle management techniques you should get taught on the course can still be useful though.
How willing is your GP to work with you?
Thank you all for your responses. Yes I'm sure I will learn something from the programe but on reading the booklet on it there is nothing in it that I dont already do. Pacing being the main thing & stretching exercises, I went to physio & learnt them but they where just to strengthen my back.
No I dont think my Doc is wiling to work with me. He thinks I've been takjng Tramadol for long enough (Aug 2011) & they cause addiction so he is weaning me of them.
Feel like I'm loosing the will to fight this anymore. Not even my family understand it/me!
so sorry to hear that you didnt get on so good this morning. Try and not get too upset and angry as it will only make you feel worse (easier said than done I know!!!). I had the same problem with my doctor when i lived in belfast with regards to tramadol as it was the only pain relieve that helped but they didnt listen and wouldnt prescibe it to me and then when i moved to england i had the same problem until a couple of years ago and now i am allowed it but only 1 four times a day if and when i need it, which is better than not having it at all.
If you want to chat about things you can always send me a message.
take care
Jo xxxx
Thank you JoJo
I will come back & talk to you when I calm myself.
Thats the amount of Tramadol I get 2 in the morning & 2 at night.
I am frustrated that none of the Medical Profession will let me talk about new pain/feelings I am having.
I really do feel like a junky begging for pills & probably if I was I would get the help I needed.
Going to my GP on Monday, as you know place closes down 12/13th July. Try to talk to whoever I get to see armed with info I've got crom people on here.
Bless you I feel for you. Its so annoying when you feel that no one is listening. Fybro pain is real and not a symptom of depression. I'm not depressed but still have pain in all my joints so what is that about. Hope you get it sorted and get some relief soon,
Martina
Thank you Martina
I've got a few days to calm & think what to do next. cant go on like this.
I am new to this site just been the the 'pain clinic' today i spent several years fighting with docs found a treatment that eased my pain enough for me to be able to live a pretty normal life. However got told that they will not increase my meds any more as i am at the Government guideline limits ha bloody ha. I ended up screeming at them saying i thought i was a person not a guideline limit this has worked for me for years apart from the last three month so just need the dose tweeked. So now i am in bits dont know what to do or where to go from here. I found the Doc condesending, arogant, superior even said thought you signed an oath to stop people from suffering.
Hi sorry to hear u had a bad time with a so called professional but for a lot of us thats par for the course wiv fibro. Ive had this damn condition bout 6 yrs now nd so far ive been perscribed co-codamol intermittently and a trial of an old style anti depressant meant to work on the nervous system and dampen down pain (cant remember the name though i know its a commonly perscribed one - damn brain fog) and which made me feel so zombified i had to stop them within a month.
Since joining this site a few days ago im absolutely amazed at the amount of treatments made available to other suffers both medicinal and other includin; pain management clinics, hydro pool treatment, accupuncture, pain relieving injections, steroids, massage treatment, physiotherapy etc NONE of which ive ever been offered!!!!!
If the so called professionals either dont know enough about this condition or the range of treatment options available wat hope have we of ever finding the right individualised treatment to reduce our pain and start living again????
Hope you get the right help soon and fingers crossed for me cuz im gonna make an appointment with my gpto fight for a better quality of care xx
or
Hi Sharon & Dixie
I'm glad I"m not alone in this having to continually fight the people who are meant tk help us.
I can tell you I was'nt depressed & have been feeling ok on that front but since comming home from clinic & thinking over & over again at getting no help I am feeling anxioys & I know a dip in my mood is on its way.
I feel list & alone because my family dont understand & I dont have a goid frind as such. She died suddenly 18 months ago & I miss having her to talk over my problems. I cut all other fruends out of my life all bevit due to the depressikn.
Sorry for rambling.
Good luck ladies
Luv & hugs
Hackue
Excuse my spelling mistakes. My fingers seem to have a mind if their own at the minute.
I feel for you as your Pain Clinic appointment sounds like he put all the emphasis on depression. Actually they dont know if depression is a pre cursor (before fibro) or a result of Fibro . However most research points to it being because of the symptoms you are dealing with cause depression. Some medical professionals are still skeptical about FMS and think it is psychosomatic.but it simply isn't true. As we all know unfortunately first hand. The research suggests we are low in brain chemicals like seretonin (among others)a chemical which is involved in regulating your mood but has lots of other functions too. Also a low seretonin causes increased sensitivity to pain so in a very small way he is right it is the low seretonin.However he is sooooo wrong to suggest this is low because of the depression when its known to be low in fibro which then causes depression. Which is what happens to most sufferers and drs think that if we become happier suddenly we will be running.....how ridiculous!!
I have been on several drugs prescribed by London to help with chemical regulation as much as possible....still have flares but feel better than I did.... pregabalin for nerve pain, snri (group of anti depressants mine duloxetine), pramiprexole (dopimine levels) and tramadol but not for the opiod effect but for its seretonin pathway...
I hope this a) makes sense and b) helps you in some way
M x
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Hi MDaisy
Yes your reply does make sense to me. I rang the surgery this morning, my regular GP had been of ill herself for quite a while, so I've got an appointment to see her on Wed morning & I hope she will be more sympathetic & understanding.
I will show her this site & see what she has to say?
I totally get how you feel. I've been to the pain clinic and it was useless. Today a long awaited rheumatology appt ended in yet another referral to pain clinic. I just sat there dumb founded and ready to burst out crying.
I went to the pain management sessions for the full 10 weeks and - at the time - thought that they were quite helpful. The physios were empathetic, the sessions gave explanations for why we gradually reduce our activity and the resultant downward spiral, and gave some really useful guidance on pacing and resting etc.
However, I'd have to say that a lot of the advice doesn't work in 'real life'. Anyone with a job, a family, caring commitments etc. can't 'pace themselves' when stuff needs doing now (or preferably yesterday). You can't give yourself a 'sleep holiday' where you go to bed at the same time and don't set an alarm unless you have a very understanding boss/family or no support network at all (which of course means that you have twice as much to do). So, whilst their intentions were undoubtedly good, I do wonder who the advice was pitched at.
Also, I was quite okay with the concept of learning, taking notes, doing activities as 'homework' etc., but a lot of the other people who attended the sessions were frustrated by being 'treated like schoolkids'. One left after the first session because she said that this wasn't what she anticipated. Another lady who I got quite chummy with as I gave her a lift to and from the sessions found the bit where you discuss your week's progress with a small section of the group unnerving because she was very shy and had severe anxiety (I must admit, this was my least favourite bit of the sessions, too). But it did give us all an opportunity to meet up with likeminded spoonies who understood the ups and downs of chronic health conditions, and I'm still in touch with a couple of the ladies from 2 years ago.
At the end of the day, it's not for everyone, and it certainly isn't the answer to all our ills, but maybe give it a shot and hopefully you'll get something out of it. I didn't get what I wanted - a way of exercising more to be able to lose weight without crippling myself! - but I do feel like I understand what I should be doing a bit more, and I've now mastered the progressive muscle relaxation, which is very helpful some nights!
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