I am sorry for the way you were treated, many on this board can relate and I do agree it is frustrating and soul destroying.
I also have to say that Anon made some good points and in a nice and unoffensive way. Sorry am not sure how to use quotes so:
“put your energy into dealing with what is happening now, because really it doesn’t much matter what its called, it is what it is, and you need to treat it the best you can.”
I suspect any person in limbo is doing just what Anon nicely suggested, treating symptoms as best as they can while trying to discover what exactly it is that is affecting them. If they are not then they are doing themselves a disservice.
As a person in limbo for years this is what I do as best as I can, treat symptoms as best as I can because I don’t have a formal diagnosis.
So, please take a deep breath and see good will where good will and support is offered.
Right I feel I need to explain some more. Telling me to treat it as best I can is pointless. The fact is I have been told “This is what you have, Nothing much will help so there is no treatment but it might or might not go away” How am I supposed to deal with it with no help. I can barely walk in a straight line for f**** sake.
This is taken from the NHS website on CFS.
The main symptom of CFS is severe fatigue (exhaustion) following mental or physical activity. This does not go away with sleep or rest, and limits your usual activities. Not that bad
Exercising can make symptoms worse. Same all the time
muscular pain, joint pain and severe headaches Some pain in legs.
poor short-term memory and concentration, and difficulty organising your thoughts and finding the right words (“brain fog”) Caused by my aed’s and had since I started them
painful lymph nodes (small glands of the immune system) Dont have
sleeping problems, such as insomnia and feeling that sleep is not refreshing Have
sensitivity or intolerance to light, loud noise, alcohol and certain foods Dont have
psychological difficulties, such as depression, irritability and panic attacks Dont have
less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature Have balance problems and diziness.
The diagnostic procedure wasnt a bit like the website says either. Maybe its not ms which is fine with me but I don’t think its me/cfs either. Surely some of you must see that.
I came here for support in what has been an incredibly difficult time but just feel patronised and let down by some people both on this thread and by pm.
Wow we all need each other on here…My symptoms are just like everyone on here fatigue is the worst you just cannot be bothered at all…I have constant pain in my arms and legs, nothing takes away the pain. I was told I had Basilar Migraine, simillar symptoms dizzyness vertigo etc, however the pain Dr’s did not understand.
She told me it cud be CFS? Will see me in 4weeks time, I feel I am going mad some days…Does any one have neck pain? I sometimes feel the Dr’s think I make things up and I question myself.
I know you are going through a rough time, but I have to say that I think you are overreacting. The problem with communicating with text is that the meaning and tone of the original author is sometimes less than clear, but I cannot see that anyone has been nasty or has tried to patronise you. So please try and give people the benefit of the doubt? If someone has gone to the trouble to reply or send you a pm, then they are almost certainly trying to help and their advice may even be valuable.
At least a couple of the people who have replied to you have been struggling to get the right diagnosis for more than 10 years. In the meantime they do what they can to deal with their symptoms (which include significant disability) because that’s all they can do. I happen to think they are amazing individuals and that I am lucky to be able to call them my friends. I think I would have crumbled many years ago, but they continue to “treat it the best they can” because you do not need a diagnosis to get and do physio, to eat the best diet you can, to avoid things that exacerbate your symptoms, to not smoke, to keep as fit as possible, to get meds for some symptoms, to get continence advice and help from occupational health, etc. What you do need is resilience and determination, especially to do all that and to keep fighting to get the right diagnosis.
A diagnosis does not guarantee help or a cure, even when it’s the right one. We all have to keep fighting in the best way we can.
Yes maybe I am overreacting but I’m so frustrated. I am banging my head against a brick wall with the medical proffesion and now I feel like I am here. I have had some patronising messages and maybe Rizzo is right in that its hard to read tone but thats how I feel.
The fact is not only have I not been given any help/meds I have been actively refused it. I have basically been told this is what you have now go away and live with it.
I really dont care what the diagnosis is but I want the right one and help with my symptoms. Instead I have been dumped.
Yes you do want help and support, its very hard not really knowing what is going on. Stay in touch with us all on here and we can help make life a little better .
Nothing in life is certain. Nothing is cast in stone, we just have to find a way to cope and deal with whatever is thrown at us.
Friends and colleagues often ask me how I cope with MS when it’s very nature is so unpredictable and variable, and my honest answer is, I don’t really know. I just do. We have to find our own way. Try things out, see if they help or not. Take each day as it comes. Make adjustments etc etc.
I don’t know what the answer is, but what I do know is that all of us pulling together on a forum such as this is invaluable. We may not all be in the same boat but we can offer each other help, support and a shoulder to lean on.
You have a lot of people behind you Nikki and although right now things are very raw, you will get there. You’ll find a way.
Big cuddles Nikki- I don’t think anyone has meant to hurt your feelings but are just trying to support you in they only way they know how by giving what advice they can (from the posts above). I know some of it might not seem helpful at present because you’re feeling frustrated but I think in a few days you might not feel the same about some of the posts. It’s easy to let our frustrations out on our nearest and dearest when we’re suffering - I know I’ve been there. The fab thing is we care about you and understand how extremely difficult it is for you. So we’re not going anywhere - I’m sorry you’re stuck with us
When I get frustrated I try and think of the stories on this forum and realise I might have it bad and it does’t mean what I have is irrelevant but there are always other people that have it worse. And it chnages my focus to being thankful for the things I can still do. It’s my way of dealing with things - I’m not saying its the way for you but you will find your own way, you’re goign through a low period now but things will get better
I’ve had ME for nearly half of my life and have now been diagnosed with finromyalgia. I’ve been back and forth between various doctors some of whom have been convinced I have MS yet like you the latest neuro is unwilling to do any further investigation despite some of my symptoms definitely being neurological.
Concentrate on getting your symptoms treated, not on your diagnosis. There are lots of services your GP can help you get access to such as pain clinics, physio, alternative therapies etc. Look at all the support sites they have really helped me.
ME has many, many symptoms and they can certainly can mimic MS.
What you are going through at the moment yoyoing between different diagnosis is c**p (hugs) but you are not alone as there are many users on here, myself included who are in the same position.
I’ve had ME for nearly half of my life and have now been diagnosed with finromyalgia. I’ve been back and forth between various doctors some of whom have been convinced I have MS yet like you the latest neuro is unwilling to do any further investigation despite some of my symptoms definitely being neurological.
Concentrate on getting your symptoms treated, not on your diagnosis. There are lots of services your GP can help you get access to such as pain clinics, physio, alternative therapies etc. Look at all the support sites they have really helped me.
ME has many, many symptoms and they can certainly can mimic MS.
What you are going through at the moment yoyoing between different diagnosis is c**p (hugs) but you are not alone as there are many users on here, myself included who are in the same position.
