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Becca_7706
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Hello,

I'm new here. I've been posting on ndrf (I'm Becca_2204 there - I meant to register with the same name here but successfully registered under a login I use on a disablity site in the uk instead :unsure: ). A couple of people on NDRF recommended I came over here and used these message boards too (maybe they are trying to get rid of me :) )

I've had syncope since 14. I've been to see numerous drs, all of whom (aside from Prof Mathias) terminated treatment saying I was mentally ill only and should try harder to be well. The jury is still out on Prof Mathias. As nice as he and his team were, the psychiatrist I saw when there wasn't understanding at all (I didn't need to be told I should bully myself off the floor because my condition cannot possibly make me as ill as I say and that both the conditions I was diagnosed with - EDS, RSD and ?vasodepressor syncope were totally normal and meant nothing at all). Just before I went in a friend with syncope died (she killed herself after being seen in A&E one day) and it took 4 weeks before it really hit me and when it did it totally knocked me and still is. I'm finding it very hard to cope with - the diagnosis I've been given, if it means what they said it did at the time (someone else diagnosed the EDS and RSD when I was in hospital) and I saw a GP who said they would sort out DLA (and did!) and was understanding about how hard everything was and said I needed someone professional to talk to.

I saw a therapist but she has made things even worse - she told me that I should tell myself I am fit and healthy and happy every day several times to stop me blacking out and being in pain - she said the EDS, RSD and vasodepressor syncope is _always_ psychosomatic and indicates somatoform especially in someone who has chronic attention seeking (I've been feeling desperate so I contacted the crisis team for support - twice in a week but they recorded it as attention seeking only even though I contacted them because I was losing control of my addiction again (but this has been ignored)). She said I should lie if anyone asked me how I was and say I am fine and smile all the time to make myself happier. Now I'm being told that Professor Mathias thinks I am an attention seeker too. I've been told to stop bothering doctors because it is obvious my subconsious is making me ill because I'm lonely (even though the cause of that is having to use friends as carers and them getting fed up which I can't balme them for at all - who wants to spend a friendship helping someone wash and clean themselves and picking them up off the pavement all the time??) oh and I'm stupid. I was told to look up somatoform and RSD and syncope to see the diagnosis is correct and she is right there are many journal articles that say these conditions indicate somatoform but where does that leave me? I went to see this therapist to come to terms with my friends suicide and the fact she was left to cope alone with her condition but she said what mattered was my being so dramatic and silly - she said my refusal to attend A&E when ill meant I must be lying (my reason for not attending is being told I shouldn't attend just because I pass out was called rubbish).

So basically my mind is telling lies through giving me these symptoms subconsiously because I told lies when younger and don't anymore and if I pretend I am fit and healthy and happy I will be. She said my life is a fantasy world and I should wake up to the fact that no-one is ever going to help someone like me.

Can anyone here relate to this? I'm sorry for going on so much on my first post and for it being so depressing. I'm having one of my bad days today :(

Becca

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Becca,

Welcome to Dinet and I hope you will find many people here who can help. We all understand the issue you have of being told it's only in our heads. We have all been told that at one point or another. We strive to overcome that and find doctors that know, understand and believe in our true illness and not blow us off by telling us it in our heads. I would continue your search to find a doctor that understands your condition and that is willing to work with and treat you. You might be able to find a doctor by talking to other people here that are from the UK as well.

We all suffer daily and try to keep our chins up while doing it. Having a chronic illness is very depressing and is a burden on us as well as our families. When your alone, struggling with a chronic illness it is worse. We all get up daily and tell ourselves to be healthy and to feel better. We do this many times during the day just to get through the next hour or to get through the next bought of pain. But doing this does not make our symptoms or illnesses go away. It is to try to keep our spirits up to deal with our own personal need at the time.

Our forum here is a very positive one and we all need each other. We work together to help each other through trying times. I'm sure you will find this forum one for great support and understanding as well as knowledge. We are all here for the same reason...We need to talk to people that understand. Plain and simple. In doing so we learn about our own disorders, learn different ways to cope with them and share our research and good doctor list.

Anyone telling you that a disorder is all in your head after it has been dx, documented, witnessed and treated by a doctor is the crazy one. We all will continue to suffer from this enigma until more research is done and answers are found.

You might want to check out the post of "I know this is a touchy subject."...It is a thread that talks about this same issue. Anyway, I hope you find the support and understanding that you need here.

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Hi Becca-

Welcome! I'm sorry things are so rough right now. It must be so hard to lose a friend who couldn't handle an "invisible illness" when you have one yourself. Mourn your pal, but don't fall into the trap of tying your fate into hers. Yes, you've got several disabling illnesses. BUT, people do have periods of improvement and recovery with RSD and dysautonomia. They do! And, many with EDS (depending on which type and severity) can have pretty "normal" lives. Or maybe what it's all about is finding your new normal and finding peace with that.

You seem to desperately need validation re. your symptoms. Your DXes alone seem to be validation for me. They certainly explain your symptoms. With so many relatively rare things going on with you, you will probably need to be an advocate/educator for yourself for the rest of your life. Many (most) docs here in the US wouldn't be familiar with your condition(s) and I'm assuming that's the same in the UK.

With all you are going through, a therapist is a good idea. You need support, encouragement, and help in learning to advocate for yourself. The therapist you are seeing sounds perfectly dreadful. SHE clearly doesn't have an understanding of your medical conditions. Your symptoms are definately NOT a form of somatization. Do not allow yourself to be further victimized by this therapist.

Before my son was Dxed, we were told that he, too, was mentall ill. THAT could be the only explanation for why he was unable to eat, fainted constantly, and slept non-stop. Aftyer almost a year of seraching for answers, his doctors at Johns Hopkins accurately Dxed him. He was NOT mentally ill. Like you, his symptoms were all due to his illness. We were able to educate his local doctors about his condition(s).

Becca, I see that as your job now, esp. when dealing with your local PCP, etc. Definately continue to seek care from specialists, like Prof. Mathias. He, or a counterpart, needs to be guiding your treatment.

Be assertive and calm when dealing with your physicians. Let any future therapists understand that you are looking for support and help in learning to advocate for yourself.

I'm sorry you feel the need to be here, but I'm so glad you found this wonderful group for support.

Hugs-

Julie

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Julie,

Thank-you for replying to me. I did feel validated by my dx, right up until I had my mental health crisis and now they are refusing to accept I am anything other than attention seeking with everything I am going through. It was a shock to get validated by Prof Mathias and his team and the other specialist he sent me to for the EDS and RSD (I didn't expect them to help me at all) and in an ideal world I would have the support I need to come to terms with that and what it means and have some support for it instead of having my subconsious blamed for it. Especially as these drs know I cannot have psychotherapy (due to problems with it in the past) and cannot afford to pay for support (so that's why I'm seeing the person I am for therapy because they are free - there really is no way I can possibly pay for help).

Thanks again!

Becca

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Becca,

Don't ever be sorry for posting anything you need an answer to. It helps to have your own thread to deal with your own issues. You are going through a lot right now and need support. Not only from us on this site, but like Julie said from your doctors as well. It is a very long hard road. You have to learn to be assertive and outspoken about needs and wants when you see a new doctor and sometimes with your current ones. But at the same time, be calm. When you get upset or angry that only shows them the emotional issues you are dealing with and they place you in the "crazy" category. I have learned from many here on this site about my illnesses. I have learned that I am not crazy or attention seeking and I hope you find the same. Prof Mathias and his team seem to be a good support for you, so ask him to recommend another therapist for you. Or ask to see someone else in the same practice. Who would want to talk to some one that acts so dreadful and doesn't understand you or your illness. I can understand how you feel. It is hard to find a good doctor that not only knows about your illness but that understands what you are going through. Having a chronic illness is hard to deal with, but please try to keep your chin up. We are all here to help support you. Your life does not have to be like that of your friend. Losing a friend is very hard and it takes time to morn and deal with. It is very hard to see someone you care for suffer and pass away from an illness that is the same or similar to your own illness. It makes our life seem so much smaller and it also bring to light the sense of our own immortality. Seeing a therapist can be a big help if you have the right one. It sure sounds like you don't. Continue to search to find one that works for you. It might take a while or you might find one right away, but don't give up until you are comfortable with the therapist you find.

Validation is very important to those of us with chronic illnesses. At least it was for me. I always felt the need to prove my disorders because they were not easily seen. I know that when I got dx, I cried...A LOT. It was proof for me that I wasn't crazy..but suffering from a true illness. I felt the need to have to prove myself to my family, my doctors and my friends. In a way I felt I had to prove it to myself. After years of being told its in my head and trying different medication, I was beginning to think that maybe it was. It has taken a while for me to come to terms with my illnesses as well as being misdiagnosed for so many years. I hope and pray that you can find the right therapist for you and come to terms with the fact that its not in your head.

I will be keeping you in my thoughts and prayers.

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Becca,

I understand where you're coming from. I quit taking Paxil (Seroxat in the U.K.) four years ago and got really, really sick. Everyone, especially me, thought I had a "nervous breakdown." Well, it turns out that I did, but not of the psychiatric type! It seems the Paxil helped calm down my autonomic nervous system enough that I didn't know I had POTS. I only found out that I had POTS when I (once again) tried to go off Paxil again, this time by tapering it really slowly. I knew something was wrong when a month after I took my last dose, my hands and feet started tingling. I started blacking out. I got dizzy. I started losing weight. I was so nauseated I couldn't eat. I did research and learned about dysautonomia, got myself tested and got my real diagnosis.

So now I'm in the process of "rewriting" my view of myself -- I'm not crazy, but I thought I was for three years, so it might take some time to get over that!

A good counselor helps. In fact, my counselor talked me into getting the autonomic testing. She knew we were dealing with more than just "anxiety." My psychiatrist also was very helpful. In fact, now that she knows about my POTS, she wants to send a couple more of her patients with atypical anxiety symptoms in for autonomic testing.

We're glad to have you here! This board (and the people on it) is a wonderful resource.

Books also can help. There's one I'm reading called "Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness" that's good. You also might find books on grief. What you're feeling is no surprise given what you've been through!

Hang in there! Things will get better, even if it doesn't seem like it!

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Becca

WELCOME to DINET!!

But I must say, I have been following your situation for a long time and must admit, it's one of the SADDEST CASES I have seen as far as how the health 'care' industry has been treating you. So much for the big talk of the UK having SUCH GOOD CARE. I am truly saddened that Mathias has turned on you as you struggle with this illness ON YOUR OWN.

No amount of cheerleading or positive thinking is going to help you get the help you need.

I just want you know we are hear to LISTEN to you and maybe if some others from the UK here have any ideas, they could share them.

Sophia

c87863ea.jpg

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I'm sorry for your struggles and your loss, Becca.

What a terrible counselor. Have you been able to try another one?

I think many of us have gone through some experience of being told by a doctor that we had a psychological condition. Most doctors who saw me, with the exception of a psychiatrist, told me I was mentally ill--until I was diagnosed with POTS by an elecrophysiologist.

I hope you can find a physician who can provide appropriate treatment soon. I am sorry it has been so difficult for you to get the care you need.

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Hi Becca,

UK here too.

I feel your pain, I have had things like that and worse happen to me. It took 27yrs to diagnose me. I was terribly ill and still am severely ill. Nowadays, I diagnose myself and then find the top person to confirm it. Otherwise I'd still be in limbo.

It's a shame you couldn't have seen Prof Grahame before he retired, he's such a nice man and doesn't think it's psychiatric. Prof Mathias has apparently taken over for EDS now Prof Grahame has retired.

Where abouts are you, I may be able to give you some help with names of Drs and specialists. PM me if you'd like.

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Hi Becca,

I am also from the U.K,

i understand what you are saying about the support system or lack of it in the U.K.

I am sorry about the loss of your friend, you do have a lot to cope with.

I do agree that once comments are written on your health records it can be a vicious circle trying to get someone to listen to you and give you the support that you deserve.

I agree what the other people on this forum are saying, it is definatly true that you have to research for yourself and hopefully find treatment to help you physically manage through everyday life.

As for friends becoming full time carers i do agree.

I have now been awarded funding for a full time carer this is all paid for, so it gives me my time back with my friends.

If you are interested in finding out more just let me know.

As for your counselling or support that all of us need and struggle to get , im afraid i have no positive advice as i have felt they have done me more harm than good.

I know there must be some good help out here in uk i just cant find it yet.

Anyway i really hope you get the support you deserve .

Take care

Maggy

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Hi Sophia!

Hope you're well and don't mind reading about my trials here too!

I'm not sure that prof Mathias has actually said what they say he has but as they won't give me access to the notes I can't say for certain and that is doing my head in! I don't want people to think he has treated me badly, him and his team were very understanding when I saw them. I honestly don't know what to think - I mean maybe if I had a normal experience with drs then I could say that it hadn't come from him, but I haven't. You know (cos of my miserable postings on ndrf) that everytime I think I have found someone to help they try a single medication and then boot me out the door and it is difficult to believe that they haven't reacted like that too.

I guess what I am trying to say is I don't have definite proof he has written what they say, and they were so great with me that I don't want to put others who might read my thread off seeing him and his team. It is possible that I am being told he has said that so I fit the theory of the psychiatric team I'm under and they don't want to accept they were wrong. I desperately want to believe that is true but it is hard to when so many are telling me it isn't.

Oh and the picture is lovely! Thank-you.

Becca

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Hi Becca,

UK here too.

I feel your pain, I have had things like that and worse happen to me. It took 27yrs to diagnose me. I was terribly ill and still am severely ill. Nowadays, I diagnose myself and then find the top person to confirm it. Otherwise I'd still be in limbo.

It's a shame you couldn't have seen Prof Grahame before he retired, he's such a nice man and doesn't think it's psychiatric. Prof Mathias has apparently taken over for EDS now Prof Grahame has retired.

Where abouts are you, I may be able to give you some help with names of Drs and specialists. PM me if you'd like.

Hi Tanzanite,

I did see a Professor Grahame when I was in to see Prof Mathias. He was the person who diagnosed the EDS!!! Prof Mathias and his team said it could be causing the problems I had and it was common to feel really ill for sometime on tilt test but no indication if you have EDS and Professor Grahame agreed. He diagnosed my RSD too. Do you think it was the same person? He was really nice but um liked to talk an awful lot and didn't have time to talk about the EDS to me because I had to go for a prolonged tilt and couldn't come back.

Becca

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I expect that was him. He diagnosed my EDS and Autonomic Dysfunction, he said the two go together.

Yes that's right. That's what they (Him and Prof Mathias) told me too. Which was great until I was sent to the psychiatrist who said EDS wasn't a 'real' problem and didn't mean anything at all and I had wasted their time as I clearly had nothing physical wrong with me. Before I was discharged Prof's registrar (can't remember his name but he was really nice) said I hadn't wasted their time and it did mean something. I'm getting so many conflicting messages from the medical profession!

It's good to hear you have seen them and they said the same thing to you. Makes me wonder if the psych team I'm seeing are just winding me up saying what they are. Which really makes me angry as they were so nice to me and professional (and drs just haven't been at all with me) and I hate to think they are saying lies about them.

Thanks for posting! If I can work out PM I'll PM you if you don't mind, though I am suffering from technologicalitis today!

Becca

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I'm no stranger from the medical profession lying to each other and to me! lol I've been through **** with Dr's. Verbally abused, neglected etc etc. Did you say to the psychiatrist that EDS is a genetic condition? They obviously don't know anything about it.

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No. I did say about it to my local one and he said I couldn't possibly have it because I would have been ill with joint pain and cracking joints since birth (which I have but had thought it normal because the drs told me it was and I should ignore it and lets face it joint pain, skin problems and over extending joints aren't anywhere near as concerning as syncope and RSD is) but I must have had syncope since birth too and since the syncope started later it couldn't have anything to do with it and must be somatoform.

If I can work out polls on this board I might put up the same one I did on ndrf and ask people who have EDS if they had always collapsed/had dys issues or not.

This is gonna sound wierd but bear with me, it means a lot to me that they have lied and verbally abused you too. Helps me to feel less alone. I don't mean I'm glad you've been through this (I wish you hadn't had to!) but it helps me in ways you can't understand and I appreciate you sharing it with me.

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I never had cracking joints or anything until around the age of 11. I used to get what they called 'growing pains' and apparently that is EDS. I've always had problems with autonomic dysfunction/POTS but it was milder back then and only now can I look back and think, oh yeah, I had it all along!

That's ok, I know what you mean about making you feel not so alone with the bad treatment from the so called medical profession. Mine is such a long story it could probably fill a book! (I'd like to write one actually!) Even though I have seen a psychiatrist and psychologist in the past and they both said all my problems were physical and not mental I still had huge problems with Dr's. I only see one unless I absolutely have too, which is not ideal as I have a lot of things that need to be sorted. I research and do as much as I can myself. I have diagnosed everything myself then sought out the top specialist if I can to confirm.

Something is very, very wrong in the medical profession when so many have to do this.

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I thought about the book thing too, I have been for awhile, maybe when I am in a better place I could do that.

I think the problem with me is I have a long psychiatric history of problems as well as my physical issues. I was an alcoholic for years, had PTSD and depression which led to an attempt on my life. I have seen psychitrists/psychologists who have said all that means I cannot be phsyically unwell too in fact it was a psych who caused the PTSD in the first place! They are trying to get me into therapy that I have been told categorically to refuse by private psychs. In fact the private ones all said I was physically ill not mentally ill even knowing all my history but the NHS ones are saying they are wrong and I must have unresolved internal conflict that makes me ill. I'm so sick of them telling me how I feel! I wish I could go private again but can't afford it I'm sure they would be able to offer me some help in finding better coping strategies.

I saw a cardiologist last year and he said a sign of a good doctor is one who knows he is human. One who accepts the patient _knows_ what is happening in their body and accepts that they cannot always fix someone but _can_ support them and who is willing to read through journal articles and notes from patients (I sent some to my dr then to educate him which actually just annoyed him) all research as far as he was concerned was welcome! The ones who don't should be avoided at all costs. Poor man had only been in the UK for a few months and didn't realise that meant 99% of his co-workers!

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I so sorry to hear all that you are going through. I remember growing up thinking doctors were CARING people that WANTED to help people feel better both physically and mentally. Boy have I learned the opposite since I became chronically ill.

I'm so sorry for the loss of your friend hearing that breaks my heart.

If you don't mind me asking, what is RSD?

Dayna

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Hello Becca,

Sorry you have had to put up with so many negative Dr.'s, it is sooo hard to find a carering Dr. but I hope you find one soon.

Did Prof. Mathias write in his report that he thought you were attention seeking or did this 'therapist' hint to it!? I think that Therapists can do so much harm if they are unaware of real medical problems, mental health is very much linked to physical health I am a firm believer in a holistic aproach to our treatment.

One of my kids has Asperger's aswell as EDS, POTS and a movement disorder, as a mum I had been labeled for a long time by school and many others as an over protective over reactive attention seeking mother, some times I thought may be I was all that, but in a way this made me more focused on finding out what was wrong with my kids. Well it has taken years but now I have got to the point of diagnosis and I will continue to push all I have to to get the support in place for my kids. On my jurney I have found a really lovely OT that has taken on board all my sons problems seeing them as part of his whole body well being. I wonder if your GP could refer you to an OT ( Occupational Therapist) in view of getting you some support in place at home.

About the passing out ITS NOT IN YOUR HEAD What rubbish is that!! again here an OT could be of help to get support in place for while you are out and about. Please try and find the strenth to get above these silly silly people that are lucky enougth not to have to have to put up with what you do 24/7 you are soo much better than them, look at what it takes to get out of bed in the morning do you think these people could do that each day with a smile on their face. Can you just picture your therapist with a huge smile on her face as she tries to get out of bed to go to the loo if she a bad bout of flu!!

Now down to what you can do for your own well being! and this is so so important. I have tried to instill into my kids minds that it is so important that they find things that they like to do and that they do it! Luckily my kids have found they all love drama acting and all that, they go to lessons out of school, they do shows and help in bit parts when touring companys need kids. We are lucky the kids all like the same thing!

I wish you the energy to find a passion that helps you deal with your health situation.

Take care Becca,

Anna

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Hi Becca,

welcome to DINET - I think you've already found support on here.

I would be very wary of believing rumours about Prof Mathias's opinion of your condition. I've only met Prof Mathias once but he seemed really nice and a "straight talking" sort of person. Do you have any follow up appointments with him or his team? Could you ask them right-out if they think you are attention seeking?

You said that you can't see your notes - have you applied for them? There is a legal clause that says that you have the right to access your own medical notes unless the doctor believes that they contain information that would harm you - if you want a copy the hospital can charge up to ?50 for the photocopying.

EDS and POTS are both real conditions that make you have physical symptoms. It is possible to have physical illness with an abnormal response to the illness, or poor coping strategies, or attention seeking behaviour. You can have mental health / coping problems alongside physical ones. I'd ignose what the therapist said about EDS - it sound's like she doesn't know anything about EDS.

I hope that Dr Grahame hasn't retired - I'm waiting to see him!! (might be a long wait if he has retired!). I know Prof Mathias sees a lot of patients with POTS who also have EDS but he hasn't "taken over for EDS". EDS is classed as a rheumatological problem so an EDS specialist would be a rheumatologist, not a neurologist like Prof Mathias. If Dr Grahame has retired, Prof Mathias would probably refer to another rheumatology consultant - there are quite a few at St Mary's / Queen's Square.

Good luck with finding the support you need,

Flop

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wow, that totally stinks!

Just a few months ago i was told by my doc and my mother that i needed to leave the forums and stop thinking about being sick. So i tried it (having a feeling it wasnt going to work, but still did put full effort into trying and doing it) and it ended up making me rather depressed every day, crying in my room because i felt so alone, and felt like my life was so sucky (my mom doesnt know about that part though) this then resulted in my not thinking about "being sick" and then not taking care of myself, so i would try and do "normal" teenage things, thinkin im "healthy" and then get the blow in the face that im not, and i would get really depressed and get even sicker.

I finally went to my mom and told her, and she let me come back to the forums, and think about being sick, and i have since been dealing with it much better!

Its been hard staring school again, and being constantly reminded of the fact that im not normal and cant do fun things everyone else can, but im deaing as best i can...

So basically, i do understand how your feeling...i hope things get better for you soon!!

Mary

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