Frustrated and upset - really long, sorry!

Anything to do with the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Frustrated and upset - really long, sorry!

Postby patator » Fri Mar 22, 2013 3:25 pm

Hi everyone, I'm brand new - so hello! Sorry to jump straight in like this, but I'm so frustrated and upset right now...hoping somebody can help a little (either with reassuring words or even a little bit of advice)!

I'm half looking for advice and half looking to vent. I've been in and out of GPs surgeries for years (I'm 30 now) with a variety of symptoms that have been causing me big problems. The biggest of these is pain; I have constant joint and muscle pain all over, that sometimes becomes so severe that I can't use the affected limbs (if it's in my legs I can only walk very short distances), and quite often I end up in tears over it. Nobody has ever found an explanation for this; I must have been tested well over 25 times for arthritis but it's definitely not that! I'm also very clumsy and have terrible spacial awareness; constantly bumping into doors, falling off pavements, covered in bruises. I have terrible fatigue - much like when I had glandular fever about 10 years ago - so extreme that I literally can't do anything when it hits; I can sleep really well all night and wake up feeling like I've not rested, then will need a nap to get through the rest of the day. I've also been back and forth to doctors with flu-like symptoms that keep flaring up over and over again, about once a fortnight on average - my throat gets sore, my glands grow to ridiculous proportions. In addition I go through recurrent bouts of having palpitations.

Recently I was referred to a neurologist because my left wrist stopped working; it's incredibly painful all of the time and won't bend at all. At the same time I realised I had some patches on my body that were totally numb, and I realised I was having some serious memory problems (I've always been scatty, but this was something totally different). I also started trembling uncontrollably in my right arm and developed noticeable muscle weakness at the same time, in sporadic bursts.

I've been through the mill and can confirm that I don't have Lupus, Parkinsons, MS, Anaemia, Arthritis or a Thyroid Disfunction. I've had blood test after blood test, x-rays, an MRI, vile neurological tests with needles in my muscles (lovely!), ECGS - nothing shows up ANYWHERE.

My neurologist decided that, as everything that CAN be diagnosed has been ruled out, it must be something that can only be diagnosed through elimination. Apparently I have reduced nerve responses in the right hand side of my body, and nerve damage in my left shoulder which is causing the wrist problems, but he couldn't find anything for the fogginess and muscle weakness. He decided to go with Hemiplegic Migraine (which causes stroke-like symptoms and muscle weakness), but did say that this diagnosis doesn't account for my pain or fatigue.

I've been plodding along since with this diagnosis, feeling really that something isn't quite right. I had to give up my self-employment because I couldn't guarantee I'd be able to work on the days I needed to with these symptoms, and I'm finding it difficult to figure out what I CAN do now; I wouldn't be a reliable employee, I can't stand for long periods, my short term memory is shocking, I become exhausted by 3pm...paid employment is going to be tricky.

Yesterday I had a really bad flare up with the pains; my whole body kicked up at the same time. I'd been feeling a little down with everything due to being out of work, and the fact that my social life is impossible as I'm too tired to go out in the evenings (and forget people's names when I do manage it, so look like the most ignorant person on the planet)...but yesterday really got to me. I'm totally sick of being told "we don't know what it is, you'll just have to live with it" when I feel like I could quite happily crawl out of my own skin. Then, my Aunt posted on facebook that she has fibromyalgia and ME. I'd heard the names but didn't know much about them, looked into it and had a lightbulb moment. I've had all of the tests, I have all of the symptoms (though I've probably not remembered to list them all here), maybe this could be the pesky issue that's giving me all the trouble?

I actually got in to see my doctor this morning (which was good, as yesterday's pains really did have me at the end of my tether). I asked him if this had been considered, as it basically sounds like the Hemiplegic Migraine I've been diagnosed with, but with the addition of my other mystery symptoms under the same umbrella. I mentioned to him that even if there isn't much that can be done to be treated, I'd like to know what this is...and also, as I'm finding that I really can't work right at the moment, I kind of need a diagnosis so that I'm not accused of being lazy/so that I can actually have a little bit of help while I'm not in work!

He's told me that fibro only affects people in their 40s, so I'm too young. He's said that it's basically depression; that the overwhelming physical pain I'm feeling is all in my head. He's told me that I have to accept that it's possible that they'll never be able to put me 'into a box' and that they might never be able to diagnose me. He's told me I need a referral to a psychiatrist, and that fibromyalgia/ME are just labels given to people who can't be diagnosed, but he was careful to stress several times during the appointment that it's IN MY HEAD and that it's a psychiatric problem. He did say that they've already done all the tests they'd do to eliminate other things, and that they'd usually diagnose after that...but that it might not be one thing, it could be that I have hemiplegic migraine and something else causing mystery pain, that they never might work out. It just seems such nonsense - I have every single symptom of fibromyalgia and ME, I've had every single test...but they want to diagnose me with something different, also diagnosed through elimination, which doesn't take into account all of my symptoms?

I'm so sorry this is so long...I'm in such a lot of pain right now (though thankfully less than yesterday), I'm exhausted and this doctor has left me in tears again. I feel like I've basically been called a hypochondriac...or mental, that I'm imagining pain that doesn't exist. I get the impression he thinks I'm attention seeking.

Would love to know if other people have had bad experiences with GPs being unsympathetic/being told that it's all in their head, how you got past it, whether you were able to find somebody who was willing to listen...anything really! I'm so sorry for having a rant, I'm just fully miserable right now. Thanks for reading, have a medal if you got to the end.
patator
UKFM Newbie
 
Posts: 2
Joined: Fri Mar 22, 2013 1:46 pm

Re: Frustrated and upset - really long, sorry!

Postby denys » Fri Mar 22, 2013 3:34 pm

Hi and :welcome: to the forum :wave: sorry you seem to be having a bad time with your doc, is there another more sympathetic doc in your surgery that you could see or another surgery in your area :?: :?: :?:

Unfortunatelya lot of people have gone through or are going through the same type of thing you are as there are a lot of dinosaurs in the medical profession, if you have no other option but to see this one then go with the suggestion of seeing a psychiatrist as when they discharge you because they cant help you will have had another ticked box :-) :-) :-) :-)
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Frustrated and upset - really long, sorry!

Postby monica » Fri Mar 22, 2013 6:34 pm

Welcome to the forum.

Yes I've had the same thing..."it's all in your head" No, actually it isn't! I've had all the tests...all negative. But the fibro test proved positive so in the end they had to believe me. Vindicated!

Sorry you've had such a bad time and at least here you are among fibrofriends.
monica
UKFM Member
 
Posts: 154
Joined: Fri Nov 23, 2012 3:03 pm

Re: Frustrated and upset - really long, sorry!

Postby Foyleside » Fri Mar 22, 2013 8:52 pm

monica wrote:Welcome to the forum.

Yes I've had the same thing..."it's all in your head" No, actually it isn't! I've had all the tests...all negative. But the fibro test proved positive so in the end they had to believe me. Vindicated!

Sorry you've had such a bad time and at least here you are among fibrofriends.


Hello Monica suffered for some years myself and through a elimanation of other things I too was told I had fibro.If you don't mind me asking how did the prove it was fibro. :-D
Foyleside
UKFM Newbie
 
Posts: 9
Joined: Wed Mar 06, 2013 12:23 am
Location: Derry City.

Re: Frustrated and upset - really long, sorry!

Postby whoami » Fri Mar 22, 2013 10:44 pm

Patator....welcome! First you are not too young to get fibromyalgia! Children, sadly get this terrible illness.

You need to see another Dr, any Dr at this rate. If you have no other choice but the Dr you see then you educate him! There is tons of info on the internet. Print reputable info on fibromyalgia. Be polite and say to him that you appreciate what he is doing but you really need to be referred to a rheumatologist or a Dr that is knowledgeable. So many people have gone through what you are.

Maybe if you put what area you live in then there maybe someone here that can connect you to a Dr who can help. I really feel your pain in your words. I had an accident at work that triggered fibromyalgia, that was 23 years ago.
Once you get the diagnosis then you will know how you can control some of your symptoms. There is no cure but a lot of people who have it can share their story and you may get some comfort from them.
I will try to help as much as I can with my story and how I try to control symptoms. Remember you are not the illness, it has not got control, you have.
Peace to your heart!
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: Frustrated and upset - really long, sorry!

Postby Flash » Fri Mar 22, 2013 11:16 pm

:welcome: I feel for you Patator, There are so many of us who have been told that all that we are going through is IN OUR HEADS... Well, it is real, that's for sure. You are not alone in your battle to be taken seriously. I really hope you manage to find a more understanding GP but until then, as Denys said, go to the psychiatrist anyway and get any problems in that area ruled out. Then, your GP will have to listen.

I started getting symptoms after a car accident and glandular fever. I was 29.

Good luck and take care. :hugs: :hugs:
Flash
UKFM Member
 
Posts: 505
Joined: Wed Aug 29, 2012 1:03 pm

Re: Frustrated and upset - really long, sorry!

Postby patator » Sat Mar 23, 2013 10:01 am

Wow, thank you so much for all your replies, I really do appreciate it - so reassuring to hear that I'm not on my own! You all seem like a friendly bunch, I'm so happy I've found this forum. I'm in South Birmingham; if anyone does know of a doctor who would be more sympathetic I'd definitely love to hear about them. One of the most frustrating things is that the neurologist I saw said he wanted to refer me to a rheumatologist but that referral never came through - my GPs don't seem too hot on following suggestions from specialists :roll: .

This doctor reluctantly agreed to put me onto Nortyripyline as I was adamant that I was not going to be fobbed off with "you'll have to live with it" when they hadn't exhausted all possibilities - I've had this response so many times over the past few years, even on days when I've made an emergency appointment because the pain was so bad that I couldn't cope with it and felt like I needed help/answers NOW...honestly, it's so frustrating. I've tried to argue in the past (before I found out about fibro and ME) that it just simply isn't possible for somebody to be in so much pain and for there to be no reason at all for it, only to be told (yet again) that it's in my head. He's said that nortriptyline is one of the things he'd use to treat ME/fibro (said with a facial expression that implied he doesn't believe these things exist at all) and that he'll see me in three weeks to find out if it helped at all. Does anyone have any experience with this? I'm thinking I may have to keep a diary - with my memory there's no way I'll figure out if there's any difference or not!

I did have to laugh yesterday when I told my sister the doctor's "you're depressed, that's all" assertion and she pointed out that the time I tried to play volleyball years ago and accidentally hit the inside of my elbow, leading to such intense unexplained pain that I was sent to A&E...that wasn't real. Volleyball just triggered a bout of depression, causing phantom pain. Same as when a shelf fell on me and four hours later I was sent to A&E in excruciating pain to be x-rayed - that wasn't real, it was depression. Depression caused by a falling shelf.

Luckily I'm having a better day today; pain is manageable (does anyone else have it constantly and therefore, when it's at a low ebb, barely notice it any more? People think I'm mad when I say that, but after just under ten years of it being a constant feature I think I've learned to ignore it whenever I can...), fogginess isn't too obvious (though I'm struggling with finding the words I want to type here!), and I actually feel like I got up having slept a little, rather than waking up exhausted. This is a good thing :-D

Thanks again for all your help and support - now I've calmed down a bit after yesterday I'll go and browse the rest of the forum properly :-D
patator
UKFM Newbie
 
Posts: 2
Joined: Fri Mar 22, 2013 1:46 pm

Re: Frustrated and upset - really long, sorry!

Postby monica » Sat Mar 23, 2013 10:35 am

Hello Monica suffered for some years myself and through a elimanation of other things I too was told I had fibro.If you don't mind me asking how did the prove it was fibro.


The first rheumotologist I saw had me in tears! He was just awful and tried to say I was imagining these symptoms. So I demanded a second opinion.

The second rhuemotologist was much better and did one of those tests where they press on certain points..didn't take long for me to start screeching I can tell you! Also he asked loads of questions about sensitivity to light, noise etc.

Good luck in finding a Doc in Birmingham who will understand!
monica
UKFM Member
 
Posts: 154
Joined: Fri Nov 23, 2012 3:03 pm

Re: Frustrated and upset - really long, sorry!

Postby moomoos » Sat Mar 23, 2013 11:10 am

Hi,

Get rid of that dinosaur of a doctor and find yourself a new one, the younger the better.

If GP cant diagnose then ask for rheumotologist.

My GP's surgery have two fantastic young doctors both in their mid 20's and I'm not interested in seeing anyone else in that practice out of the 8 doctors working there. The Advanced Nurse Practitioner is fantastic too.... she is who picked up first on what was going on with me and started the ball rolling with all the blood tests... when all those were done and came back clear, she passed me on to one of the young doctors. As soon as I walked thru her door she had print outs ready to hand to me about FM. I'm lucky in that I have very good doctors here.

Please find yourself a new one who will understand your problem, you'll feel so much better when you do. xx

Editing to add...... that I have been referred to a rheumotologist and from there I'll be passed on to physio, which I'm hoping will help, and also I'll get to join a FM Support Group from there which runs in my area. I cant wait to try exercise to help with pain and to be able to join the group....................... so please....................... find yourself a new GP xx
User avatar
moomoos
UKFM Member
 
Posts: 657
Joined: Fri Dec 21, 2012 1:14 am
Location: Yorkshire

Re: Frustrated and upset - really long, sorry!

Postby whoami » Sat Mar 23, 2013 1:07 pm

Morning.....I just wanted to add.....the Dr wasn't all wrong about antidepressants.

Most people who have fibro either have, are or will be on an antidepressant. They actually can be used as a pain killer if you find the right one. I have been on one or another antidepressant for all 23 years. Don't take it that the Dr is suggesting that it is all in your head. They can be of a huge benefit. Try to find a new GP who understands fibro or demand your Dr to refer you to a rheumatologist. It is hard but try not to take all the negative comments from Dr's personally. If they don't have the right knowledge then how can we expect them to understand. Take care, I hope you have success with a Dr soon. Xx
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: Frustrated and upset - really long, sorry!

Postby Flash » Wed Mar 27, 2013 1:26 am

Yes, Whoami, I take diazepam with paracetomols sometimes. I don't take them often as I don't want to get used to them but on a real bad night, they help the paracetomol to work better by relaxing me more. Especially good for helping ease neck spasms. I get a better nights sleep too. I originally hated the idea of taking anti depressants and I don't like taking pills anyway but sometimes I'm so desparate...
Flash
UKFM Member
 
Posts: 505
Joined: Wed Aug 29, 2012 1:03 pm


Return to Doctors & Health Services

Who is online

Users browsing this forum: Majestic-12 [Bot] and 3 guests

cron