So,physiotherapy referred me to the pain clinic, they couldn't do much for me so they referred me to the pain clinic.
The pain clinic decided I needed to see a psychologist because I mention I was trembling from the inside out but it's only visible on my left side. Spoke with a very nice lady, who agreed that although I had been through a few things, I was not in need of her services but she would put me in touch with an occupational therapist, I got that call today, we chatted and again , this lady doesn't know how her service can help me either, ever feel your being pushed from pillar to post?
My good news , I was accepted for PIP, standard rate but I'll be reviewed Dec of this year.
I wonder where or whom I'll be speaking to next?
Hope your all having a good day, I was an went a little shopping but I need to lie down now, I'm shattered xx
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Cheekybacksid
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I completely understand where you’re coming from I’ve been through them all to. I started at pain clinic and got some acupuncture was then sent on a 12 week pain management course then on to mindfulness course for 8 weeks. Was then sent to homeopathic. Had some physio at the start to along with hydrotherapy and then Tia Chi. Like yourself was also sent to psychologist due to previous issues from the past but didn’t really help. My GP is very good but is struggling what to try with me next as I suffer so much pain in my legs in particular. The problem with fibromyalgia is that there are just no specific drugs for this condition so the GP has to try different things to see what will help. In my case there are no painkillers that can help and I have to try and motivate myself with hobbies to try and distract me a bit. I think my main issue is that I use to be very fit and did a lot of charity runs so I have quite big muscles and now with being so unwell they are starting to become very weak and cause me so much pain. I am trying to keep a bit active to stop my muscles from wasting. I take medication for restless legs as well as the pain because at night my legs are all over the place and I am very frustrated.
Sorry for going on a bit . As for where you will be sent next I have no idea as like you I have been through them all with no help in fact one consultant told me I was just stuck in a rut which I was astounded by his comment so I just left his office as I didn’t find that helpful. I have bought loads of creams and gels which has cost a lot over the years but in the end nothing really works long term.
You truly have been through them all, lol.im sorry that nothing has helped.
I bought aloe Vera heat cream , it help with my pain a little and smells nice too. I also take cinnamon tablets and apple cider tabs,I'm in pain but nowhere near what I was.
I also use level patches. I guess we all do our best to feel some what who we used to be.
I'll carry on with my medication but truth be told, I don't think it's helping anymore.
I worked in the nhs, I'm finishing this month due to ill health, I've worked all my day so this really is the cherry on top of how my life has changed but also the fact of not realising the pain and the many many other things that fibromyalgia brings.
It's debilitating and half if not more of the people who are ment to help us don't understand it and can be quite dismissive or condescending .
I guess we just deal with it in the best way we can.
I'm on gabapentin for my legs, it now upto 400g x 3 a day but to be honest, they still jump but maybe not as bad as your sound.
Don't think your going on, it's just nice to hear from others going through all the changes we are .
We are all fighters cazza, even if we do like to have a moan about it now and then, lol.
Hi cazza i see you work for nhs i also work for them can i ask what happens when you get signed off for ill health. I also suffer from fibro and other conditions etc back pain ibs ulcer copd. Ive been on sick but my sick pay has run out. Does nhs seen you to ot. I know if i get paid off for ill health i ll recieve some money.
Hi Maggie, I have been been of a year now, I get a monthly well being call but have had nothing new to tell them.A few days ago I had a call from occupational health, my manager had given them questions they would like answered and after a lengthy conversation, it was agreed that I wouldn't be fit for work anytime soon, ( I knew this but didn't want to admit that to myself).
This month's well being call will be to finalise things, holiday pay and a weeks pay for each year you have been employed with NHS and that's that, I will no longer be employed.
I have lots of illnesses.. about your restless legs I am taking Pramipexol This does work. But the pill is to be taken before bed. I have gradually puledl the time back. Now I take it at 6.30 pm. If you haven’t tried this ask your Dr
Wow, your very lucky to have been seen by all these people especially at the moment , or even spoke to at least it shows your Dr is willing to try different things, I’ve never been offered a pain clinic , or physio.!
Right, so it’s the physio who started it all off , shame they couldn’t help you though., have you tried Epsom salts baths , I also find deep heat patches really good,
Hi, I will try it, I'm using aloe Vera heat lotion and I wear a level patch daily, I take cinnamon and apple vinegar tabs daily and do the best I can with the pain I have, some days better than others but hey hoo, mustn't grumble lol
I am trying something called Perrins Technique with a chiropractor. No quick fix or promise of cure but until I caught a heavy cold followed by a urine infection I had been feeling better after about 6 treatments. I've regressed definitely since the infections but I'm looking forward to going back to see her again and ho pefully improving again
I’ve seen all these professionals yet none of the recognised treatments like gabapentin,pregabalin, duloxetine has helped my fibro. Physio and Ot very limited benefit too. Psychologist said I’m fine and could give her lessons! Pain management courses I just found common sense and I was already practising what they preached.
Recent blood tests done by my GP searching for other causes of my pain have now revealed a potential hyper thyroid issue and high ferritin levels. No action to be taken yet but tests to be redone in 6 weeks. I think they are now thinking it’s either a misdiagnosis of fibro or it’s not just fibro that’s causing my issues …… all this started in 2015 so it’s a slow process!
I also suffer from Psoriatic Arthritis so it’s quite a muddy picture….
Oh you poor soul. Its the not knowing that worrys the most.I've been getting my bloods done for over a year and every month the receptionist would call and say , the doctor would like you to repeat your bloods in 4 weeks.
6 months in I called the doctor for something else but while on the phone I asked why so many bloods, what's wrong and her reply oh were just keeping an eye on them, again I asked why, she claimed she didn't have time so I told her to make me a face to face appointment, she said after your next bloods.
The next bloods all was great, nothing wrong , I'm like???.
A couple of weeks later, my nails are splitting in the middle, oh go for bloods and that's me now waiting for my February bloods , the letter says they are slightly above normal and just repeat ,my nails are still splitting, no advice on that .
It could be that fibromyalgia is caused by something going on in the thyroid ... After all, it produces hormones, and hormones can be wicked if they get out of balance.
I too have been referred to rheumatology, endocrinology, pain management clinic, physiotherapy, psychology, acupuncture and had my bloods done before each consultation.
My GP has, over the years prescribed me every different kind of pain medication available with little or no relief.
We've pretty much run out of options other than the TENS machine and opiates for the really bad days.
I applaud the medical professionals that have spent their time, expertise and budget on what is currently a condition neither them nor us completely understands, not to mention a pretty awkward patient.
This morning I am off to have the first of a series of injections in my eye to try and reduce a vitreous oedema before it sends me blind.
Totally fibromyalgia unrelated but I'm glad there's an expert there who knows what they're doing.
I have no faith in NHS no one seems to want to give you a diagnosis, just palm you off in ever decreasing circles that are useless.No wonder so many people commit suicide
Unfortunately, at this point in time, diagnosis is a process of elimination.Being "palmed off" to different specialists is part of that process.
The end of the process is the really frustrating part because it means that they have run out of alternatives and you've arrived at a diagnosis of a currently incurable condition that, for many folk,is also untreatable.
I really wish there was someone else left to "palm me off" to, in the hope that they might tell me "actually it's not fibromyalgia...and here's the cure."
Hi jhorsf,I guess they have to see that it's nothing else and where as I am grateful for all these people contacting me, I guess I feel a little guilty because I didn't feel I needed these appointments.
Psychology and OT where very firm when asking about my mental health and suicidal thoughts and feelings and I'm sure , had I felt this desperate, they would have been there for me swiftly.
If your feeling this way, please speak to your GP or call any of the professionals, who will listen and will help.
Initially, before my diagnosis, I had so name bloods, xrays, here, there and everywhere, final I went to rheumatology and after some test , the consultant told me what I had.
It was great to get an answer after so long , I thought it was all in my head but I am grateful for thier time and effort
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Pain clinic got it wrong 
I need advice about OT assessment, don't know what they do or what to expect?
Pain Management Clinic
Wondering what to do now?!
