Why does the system take so long?

Why is it you can go and see your Dr who is great, and tells you they will send a referral for your pain injections. Only to find out from a letter two weeks later, that they have referred you to a different hospital, to be seen by a new Consultant, for a new assessment?!

Therefore not getting the injections you are waiting for, and bloody well NEED NOW?!

I went onto the website and looked at the new self-booking process, where it told me the normal wait is 15 weeks for an appointment, yes you read correctly, 15 weeks!

So I decided to ring the phone number and see if this was true.

Was it a new assessment appointment? Yes.

So it wasn’t the pain relief injections I need for my shoulders? No.

Were there any appointments? No.

What happens next? She has put my name on the waiting list, and informed me I should be contacted within the next 2 weeks. That if I am not contacted, to then ring another phone number which she gave me, to see what was happening.

You see, I now have ‘Chronic Bursitis Osteoarthritis’ in both of my shoulders, at the ‘Acromioclavicular joint’. In our bodies we have more than 50 bursae, which are tiny little sacs that give out synovial fluid which helps by making joints and muscles move fluidly. Though if bursitis occurs, then the bursae becomes inflamed, meaning the motion of joints stops moving fluidly, and becomes very painful.

Which also means I struggle walking and getting around. By using my walking sticks they send shock waves up my arms to the shoulder bones, which makes it worse increasing the ‘wear and tear’ and giving more pain. It is a never ending cycle, and will never go away, it is looked after and helped by ‘Ultrasound Guided Injections’. Then as you never know when the injections will wear off, or depending on how much I use my arms, when the pain will start again. This means I am unable to know when to ask for the injections, until I am in crippling pain.

Osteoarthritis runs in my family, which is why I also have ‘Degenerative Disc Disease’ or (DDD), in the lumber area at the base of my spine. It isn’t actually a disease, it is just the name given, so my bones rub together.

Back to the way of how we are now to book our own appointments, seems a bit like a ‘let out clause’. Each time you wait that little bit longer, therefore nudging us along until it gets to the 15 weeks you would have waited in the first place, for an appointment.

Now don’t get me wrong, I think we are very lucky to have our NHS that looks after us. I worked in the NHS so I know the incredible workload everybody that works there has. I experienced it in the 4 years I worked there, until I became ill with ‘Functional Movement Disorder’. It has even been said that the stress of my job, could have been a part of the jigsaw that made me ill. Who knows? 🤷‍♀️

But I question, why should I end up having to ring everywhere, until someone agrees with me. So that they will send a note to the Dr, to refer me to my original Radiology Dept for my injections appointment?!

By which time I am crying, in frustration and pain! 😭😭😭

I just have nothing left, no energy, just pains throughout my body.

Then the medical professionals, and government, question why we get depression. If they went through all the hoops we sufferers have to jump through, they would understand immediately 😐

Thanks for reading folks, and look after yourself and your loved ones xx

Thank you!

Hello, I just want to say a quick ‘Thank you’ to everybody who helped in raising awareness of our disorder for our awareness day on the 25th March.

But also for the continued help throughout the time period before and after, and the support and help that is on going.

Everyone of you who helped, in anyway way large or small, you are all stars!

We know it is a struggle getting our Functional Movement Disorder to be more known about. For us to try and teach more people about it, and to get the wider awareness out to more and more of our medical professionals.

It may not seem much to some, but I am so very grateful to one and all who have helped in your own small ways.

For anyone who still wishes to send their story, and any photos they wish to go with it you can use the contact page. If you just want to send a few lines of how you cope by yourself to let others know your struggle, you can still use the contact page. Or if you are a carer would like to say how you feel caring for loved ones, what it does to you when struggling to get drs to understand, you can have your say.

We can all help the fight of growing awareness, and how it affects the many lives, not only the sufferer, but those around them. The contact page is there for just that, so contact us any story and we will try to get the much needed awareness raised. Please add if you are happy for your name to be used, or if you want to stay anonymous.

As always I send you all my best wishes, thank you for reading, and I will catch you later folks 😊 XXX.

Working together #WeCare4FND

“Awareness Day” gets ever closer!

As our awareness day gets ever closer, you can find lots of information in the link below 👍

https://www.bit.ly/2ChejtV

Remember you can be a part of awareness day! 😁

AWARENESS DAY 2019

AWARENESS DAY 2019 is coming up on the 25th March.

This year we want to hear stories from carers, friends, family, who help look after a sufferer.

How does it effect you and your life?

How does it effect your relationship with the person sufferering?

You can have your voice heard, and tell us your stories, just use the contact page.

Please help raise awareness by sharing this post, or printing off the flyer and leave some in your local doctors, or even hospitals if you are near 😊

Lets raise as much awareness as possible,

THANK YOU! 😁 👍 😊 🤗

Awareness Day 2019!

Hi folks, yes it is coming up to our ‘Awareness Day’ again. This year it is on the 25th of March, and we are going to try and look at how carers help many of us sufferers.

We will look from the view of the sufferer, the way it makes us feel. But we want to know how the carers see it, how do they feel having to care and help us in the many different ways required. We know being cared for isn’t easy, but we also know that being a carer is not easy either. Which is why we want to show thanks to all our carers out there young and old, by bringing them to the forefront this year.

You can show it too by using the hashtag #WeCare4FND or #WeCare4FMD in any posts you make on social media, it is your personal choice but either raise awareness and mean the same.

We hope that some of you would like to share your stories either by writing or short videos. You can send them to Functionalsufferer@gmail.com or by using the contact page here on the website.

Let’s push ever harder, and grow our awareness folks!

#FNDAwareness #WeCare4FND #FMDAwareness #WeCare4FMD

Thanks for reading and as always, take care folks 👍😊

Did you know?!

After posting how I was eventually diagnosed with Fibromyalgia last year, I have been looking into it more.

I found another poster, which shows more points relating to areas of the body that are impacted by having Fibromyalgia.

Image from Google images.

As you can see from the poster, there are many areas of the body that can get inflammation. It surprised me to see how it can impact on our bodies! I can relate to all of these points, which is even more scary to think about.

I have been ill for years, and you think you cannot get worse. Sadly of course you can, but I try not to think about the underlying problem anymore but try to just get on and work through it. I am disabled and I am not going to become able again, so I have learned to live with my problems. But maybe that’s the problem!?

Even though I cannot walk, and my back problems are not from FMD. The time it took to eventually get the drs to scan my back, must have had an impact on how bad my back has become. If they had not kept saying it was functional, then maybe I would have had my back scanned earlier and there would have been something they could have done, to help it from becoming this bad.

However, back to looking at the problems from Fibromyalgia, maybe we need to insist on looking at each symptom separately. That way we may be able to stay on top of our pains, and cope enough to move on to sort out the next symptom.

I truly do think we need to keep asking our drs to look only at the one problem we have at a time, and not to say it is part of our functional disorder. As by doing this the symptom then can get forgotten, and therefore not helped!

Take care as always folks x

Fibromyalgia

I now also have the condition named Fibromyalgia, which is where there are a number of pressure points on the body that can set off pain and inflammation. It is incredibly painful and there is limited help offered to cope with it. Again treatment offered is given in tablet form, along with CBT and Physiotherapy.

I had been in such pain last year, my head, neck and back got so much worse I got an emergency appointment to see my doctor. After checking me out, he said there were no signs of anything being wrong. No swelling or anything with my neck or back, which was good news. Though as he checked my notes online, he saw there was a letter from a Rheumatology Specialist I had recently seen at the hospital. After reading up on the information from Rheumatology, he said he was now sure I was having a Fibromyalgia flare up. After reading the last letter she sent, it noted how I have all the 18/18 of the Fibromyalgia pressure points for pain. I struggle a lot especially with my head being foggy which makes me very tired. The neck pain and the pains round my back really bothers me a lot. Trouble is as my doctor discussed and explained, I already take the full amount of pregablin tablets he would have offered. Plus, as I take so many other medications for my other problems, all I can do is keep cooling or putting heat on the areas in pain.

The most annoying thing I find difficult to deal with, is that the causes of why people get Fibromyalgia, actually seem to be very similar to Functional Movement Disorder! It can just start one day, and you learn and to live with it. Though it surprised me that no doctor had thought of this before.

If you think you may possibly suffer from Fibromyalgia then please look after yourself and go see your GP, they will assess you by firstly ruling out other conditions. Then by looking at the criteria, for the diagnosing of Fibromyalgia. Through elimination, and checking of criteria, only then will the diagnosis be given.

Take care of you, as always 😊

Happy 2019

As we all start the New Year of 2019, I would like to wish everyone the very best in both their health and their hopes for the future.

Last year was a big step forward for the growing recognition of Functional Movement Disorder, Functional Neurological Disorder, and Non Epileptic Attack Disorder. Through the joining of groups, charities, and other institutions, between all of us using the same date to make a big push for awareness we created lots of interest about our disorders.

From highlighting the different symptoms, and how patients can suffer from each symptom differently, it brought light to shine on both same suffering and individual suffering.

How some suffer only weakness, some spasms, some seizures, some fatigued, some who suffer a combination of symptoms. There are so many symptoms that sufferers have to live with.

Now there are more people talking to family and friends without feeling on their own.

From all the new and many researches being done, Doctors now talk and are beginning to believe that the disorder is physiological instead of only believing it to be psychological. This has been a major step forward, at last showing the proof from FMRI images which show differences in the brains of people who took part in the research.

We have a lot to thank the participants of these researches for, as well as getting answers for theirselves they also helped to get answers for many others.

From here we can only go forward in this exciting new time. I look forward to a future of hope for new improved treatments, and continued research to make sufferers futures easier.

Take care as always x

Drink coffee and stay awake ☕️

I am tired, I am always tired no matter what time of day it is. I drink coffee to try to wake myself up, then I drink another! Though I am still tired, always tired 🙅‍♀️.

Sometimes I read things and it still makes me upset, that we continue to suffer. That we have still not got to a point where there is a structured treatment set up to roll out for everyone who suffers from Functional Movement Disorder yet. 

I go see my neuropsychologist tomorrow, I haven’t seen him in six months because I was ill yet again, which basically means I either was ill and couldn’t get to see him due to movement problems or if I was having injections or something else that I needed more.  I’ve not had an appointment for a while, this is the longest time I have gone without seeing him. I used to feel I needed to see him regularly to talk things out, to feel safe and secure that he was helping me get better. I’ve been seeing a neuropsychologist since Sept 2012, so I’m not far off six years. I no longer feel the horrible “need” to see him, I think I am approaching a turning point. That I do not need a crutch to lean on so much, that I am stronger in that way of thinking, though seeing him at longer stretches out times I think will give more to talk about..

Unfortunately I am weaker in my illness, as you know I have Functional Movement Disorder which mostly effects my left side but I have bits in my right such as my hand, along with the other body problems it gives. I also have Dystonia in my face and cervical Dystonia in my neck. I still have my  Non Epileptic Attack Disorder seizures which are back and usually worse, I have to try and not get upset and stay as calm as I can if I am on my own, though some I wake from along with the bruises. Along with my chronic pain syndrome, and chronic fatigue.

I was also diagnosed in  recent years with Degenerate Disc Disease, and the MRI scan shows my back is straight where it should be curved which gives more explanation for the pain, it is not just the nerves that are trapped.

Then more recently my knees, and hands got the most terrible pains. I was seen by a Rheumatology Doctor who also diagnosed me with the 18/18 points of Fibromyalgia which explained a lot. I was also having excruciating pain in my right shoulder, and was sent for an Ultrasound showing I had burtisis with the fluid in my arm, and showed I have moderate Osteoarthritis in my shoulder joint. More pain, and nothing to stop it.

I get injections in my face, eye and neck for my Dystonia. I also get injections in my back facet joints and have epidural injections in my back to send the pain relief down for my legs.

Now with my new problems, I am lucky enough that my dr does small surgeries and he injects my knees for the Rheumatism pains.

I have go to my local hospital for guided injections into my shoulder, which may become both shoulders in the future. I’ve started getting pain in my left shoulder, as the consultant who did the guided injection he explained it is not unusual because when one side is damaged we use the opposite arm more to reduce using the painful arm. This then starts to wear this arm down and leaves a person possibly with both shoulders needing injections. They cannot be done together though because the pain that comes from having the guided injection after the anesthetic wears off is immense! I couldn’t use my arm for a good two days. But I am very aware to not over use my left arm, as I do not want that one to wear down with Osteoarthritis too. 

Well I got through writing this without dropping to sleep, I fall asleep a lot while doing things. Either watching television or on the computer such as this morning! I suddenly wake up, it is the weirdest feeling. My fatigue can be hard to manage because you have to live your life, I cannot sleep through it. Though at times I would like to stay asleep in my dreams, where I am well and walk or run with the air rushing past me. Though it’s not to be, not unless I’m in my wheelchair or on my mobility scooter, then the air rushes past me even faster! 😁

Thanks for reading, and as always take care folks x