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Post by carlie on Aug 28, 2007 10:35:48 GMT
hi everyone, iv just read thro all of ur posts and relate to so many of the physical symptoms. To me they r the most soul destroying thing i have ever experienced. Part of my illness is that i convince myself i have the worst possible illness, at the moment it is a brain tumour. I wont settle til i get a scan to see if i have one, thing is my doctors are rubbish and jus see me as a time waster. My family think im insane!! Does anyone experience a tingly numb sensation down one side of the face? my other symptoms i get are- dizziness, faintness, nausea, bad headaches these are the ones im convinced is a tumour. Be so glad of some response i feel like im gonna explode, all the medical sites dont tell u about all these horrible feelings, carlie xx
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Post by chica on Aug 28, 2007 12:27:21 GMT
Hi Carlie, I definately experienced, dizziness, nausea, tingly sensations not down the face but down my arms and legs, horrendous headaches, and yes sometimes feeling like I was going to faint. I still have these episodes sometimes, but not as frequently as I used to. I hope this helps, I know what you mean though about thinking that you are dying. At my worst I wished that I was, and that it would at least give me an out without the feeling of guilt cos it just was one of those tragic things and couldnt be helped. Dont feel like that now though, as I say this was when I was at my worst. Hang on in there honey. You will get stronger.
Sending love and hugs Chica
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Post by yoyo on Aug 28, 2007 18:40:47 GMT
Big hug to you x x x
Carlie I'm so sorry you're having a tough time.
I can relate to so much of what you say. My advice springs from my own experience - please try not to look up your symtoms on the net!!! It makes you worry x x x x
If you are worried you must seek medical help but the symptoms you describe are also very closely entwined with PNI too x x x x
Keep talking it through x x x
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Post by carlie on Aug 28, 2007 18:53:56 GMT
Thank you for replying The reason im so convinced i have a brain tumour is because i go on the net and look up the side effects, its become a bit of an obsession that i need to break. I have been to my gp and raised my concerns but they say they have no concern that i have a tumour, but i dont believe them! Since readin other ppls experiences on here it has eased my mind a little. The thing is i was doin ok havin odd bad days, but then a family incident happened and it has knocked me back down again. On a positive note i have joined the gym as i have heard excercise helps lift our mood. I jus thought by now it would have gone it feels like i have had it forever!!! xxxxxx
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Post by winegirl on Aug 28, 2007 19:04:03 GMT
Hi carlie
I have suffered and still suffer with all the symptoms you describe. I spent months in and out of the GP demanding an explanation, and frightening myself by looking up my syptoms on the net. I was told that it was all anxiety related, but I didn't believe my GP as I didn't think I was anxious. I have now been diagnosed with General Anxiety Disorder and am about to start suitable medication to sort it out. It is strange how the chemicals in our body can effect us like this. My symptoms were/are as follows:
Dizziness Nausea Faintness Tingling Head Headaches Chest Pains
Have had many more since but they are starting to improve and I am sure they all go away eventually. Get yourslef checked with your GP if you are ever unsure of anything, but what you describe here to me is classic physical mainfestations of PNI.
We are here for you if you ever need to talk about it x
Winegirl x
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Post by carlie on Aug 30, 2007 19:40:11 GMT
Thanx for replying, My symptoms r much the same but its very hard to put it down to anxiety when u dont think ur anxiuos!! Even the comment u said about 'if youre ever unsure ask your gp' rings alarm bells in my head!! I start thinkin, god maybe she thinss there is somethin wrong like a brain tumour or something!!! The physical symptoms have not been so bad the last few days. My care co ordinator thinks they r all related to the pnd but my gp is so rubbish, I cant talk to them properly and they seem to have no understanding of this illness at all. All they do is say- here have more pills!! Wen i went with the dizziness and headaches after my care co ordinator told me its part of the illness my gp said i have a virus!!! Its laughable, i said so iv got a virus thats lasted 9 months on and off since having my daughter!! I think im goin to change doctors!! xxxxxxxxx
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Post by winegirl on Aug 30, 2007 19:47:29 GMT
Carlie
Honestly I could have written all that you just have.
I was told on so many occasions from the GP's that it was `a virus' or `vertigo' or whatever they came up with. Then when one GP sinally suggested anxiety I screamed at him `I'm not bloody anxious I am ill'. But he was adamant that underlying anxiety caused by the chemical seretonin changing in your body can cause you to feel so poorly.
I have since been on an anxiety management course and am about to begin a prescription of Fluoxetine for the anxiety.
I really did get sick after months of hearing it was a damn virus!
I really think this is PNI Carlie, and it will go. I only say to check with your GP as I am no medical proffesional and I think everything should always be checked out (honestly my GP is sick of the sight of me!)
The dizziness gets better, and you will start to have more good days than bad. Hang in there mate, we are here for you x
Winegirl x
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Post by scarlet1 on Aug 31, 2007 7:18:04 GMT
Hi Carlie, It's the anxiety hun that's making you think you have a terrible illness/disease (even if you don't think it is). I was like this at the beginning (and during blips). I thought I had an incurable mental illness/OCD/brain tumour... I turned myself into a bit of a hypochondriac (as you do ), searching the internet for answers, but it didn't make me feel any better. You don't have to experience panic attacks to be anxious Carlie, anxiety is excessive worrying about things which you wouldn't give a second thought about normally. A thought enters in your head and you obsess over it until you convince yourself that you have something serious....you may even make yourself experience a few symptoms like headache, backache. I promise you that thinking in this obsessive way diminishes as you get better and like you said you were doing quite well before having a stressful time recently. I think you are having a blip hun, and your anxiety had reared it's ugly head a bit, try and ride it out because it's part of recovery and it will go. Hugs Scarlet X
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Post by cheshire on Aug 31, 2007 23:37:17 GMT
Hi Carlie,
What Scarlet describes above:
.....I was like this at the beginning (and during blips). I thought I had an incurable mental illness/OCD/brain tumour... I turned myself into a bit of a hypochondriac (as you do ), searching the internet for answers, but it didn't make me feel any better.).....
- was how I felt too. I openly describe myself as a hypochondriac to my GP now (like she didn't know already) - she doesn't laugh as she knows how seriously distressed I have been each time of seeing her and how convinced I would be that I was probably dying.
I would say always get checked out if in doubt, but also give yourself enough distraction on some days to push the bad thoughts away and try to give yourself 'time off' from the dying/ morbid thoughts.
Anyway, whether that's helpful or not - we are here for youx
Hopefulx
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Post by me again carlie on Sept 1, 2007 20:54:57 GMT
Hey scarlet. Thank you for replyin to my message and explaining about anixiety, it makes things a bit clearer to me. I find often the symptoms go a bit if i am concentrating on somethin else and my mind is occupied but as soon as i sit down and do nothing the symptoms come back and i start thinkn, why are they back, i wasnt even thinkin anything so it must be a serious illness' My doctor doesnt even mention anxiety at all, my doctors are really not very good at all. She just does physical examinations and tells me i must have a virus! I have had a full lot of blood tests done and they aall came back fine except my immune system is a little lower than normal. Im really considerin pushin the gp to do a brain scan to check if anythin is wrong in there. She does nothin to really put my mind at ease,jus says come back if it gets worse or doesnt go. I try to rationalise things and say to myself it must be the depression cos i was not physically unwell til after havin my daughter. But then this other voice says, hang on maybe it is a tumour that is jus started to get bad. I had depression in past and it was so very to pni. My care co ordinator does think the physical stuf is to do with the depression but as she is not a medical professional i cant take her word for it. I have read up on the net about brain tumours and i have some of the symptoms. My doctor stupidly said to me, i really dont think u have a tumour, if you had these symptoms then i would be concerned. So now i know the other sympoms i have started to get them!! Im a lost cause!! xx
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Post by monica on Sept 1, 2007 23:24:41 GMT
Hello
I'll just write a quick note as it's late and will write more when I can but I jsut wanted you to know that I 100% understand where you're coming from and why cos that was me when I had PNI. Often people incl drs associate PNI with depression/anxiety but this illness also can have very physical symptoms, which often can be associated with anxiety but others which are not.
My symptoms started when my second child was 4 mhts old (dditn' have any probs with first). After a manically busy week, I develped a pressure behind my right eye, sensitity to light then shortly after foggy headed,double vision, extreme fatigue, headaches and also tingling senasation couple with numb patches, dizziness and probably others I've forgotten about. All these came on withing a couple of months.
I saw loads of different gps, several different eye specialists, a neurologist and eventually ent specialist where I had a ct scan of my sinuses. I also had blood tests all of which revealed nothing.
I too googled my syptoms and came up with brain tumour, I was convinced I was dying and after a while this anxiety took over my life and also made my symtoms worse.
I saw one excellent gp, who alos said she didnt' know what was up but didn't think it was anything serious. she said though she would refer me to various specialists to rule things out. I started antids as several mths had passed of me being ill and I was in a horrific emotional state and many of my physical symptoms imrpoved and disappeared but not all(although these have now).
No one has said that my symptoms were PNI related but they didn't find a cause for them so I have to put it down to this! Coincidently they started shortly after the birth of my child.
I just want to reassure you the likeliness of having a brain tumour is v remote - and I'm sure your dr would have picked up on some alarming symptoms, but for your own reassureness it might be an idea to push to see some sort of specialist.
Take care
Monica
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Post by Jay on Sept 2, 2007 14:47:42 GMT
Hello
It is awful to read that you feel like you do.
I am caught in the cycle of thinking all day about my illness, which then makes things worse. As I wake up in the night my mind is there with it all again.
I too have a lot of your symptoms, as well as palpitations and from time to time get chest pains.
Today it feels like my head is shut in a vice, like a squashed sort of feeling. And I feel so tired that I cannot move hardly.
My gp and people I see do not explain anything, and I feel they are fed up with me and almost seem cross that I am asking for help. But I do know that stress and anxiety play tricks of us and can make us feel so ill that we can think we are going to die. You talked about how distraction can take the edge off of things, and I find this too.
Are you still thinking you need a scan? My thoughts are how stressful and the increased anxiety which will go with the wait for apts.
I hope these horrible feeling go soon. I send my love Jay xx
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Post by carlie on Sept 2, 2007 18:39:25 GMT
hey monica, thank you for your input. Its amazing to find so many understanding ppl who have suffered same things as me. I was beginning to feel lke some sort of alien!!! What i cant get my head round is the physical syptoms jus comin on all of a sudden out of the blue when i dont recall even thinking about anything? My friend text me yesterday and said ' dont lay down and let this beat you, pull yourself together and fight it'. Well i must say i was rather furious!! How dare she!! Its so difficult to explain to someone what it is like goin through this illness it really is. I jus started gettin that tinglin numb thing down one side of my face its horrible! Keep thinkin my face is gonna droop!! You say ur better now monica? How long did u suffer for? Its been nine months for me so far.
Hey Jay, Sorry to hear you are having a hard time. How long have u been suffering for? Iv been going through it for nine months, im in the middle of a blip at the moment things were ok ish for a month or so. Im on anti'ds But they dont stop the bad patches im sad to say they r no miricle cure!!! I could take more, higher my dose but i dont want to. Are you getting any help and support at all? I understand how you keep thinking about your illness, get racing thoughts and things?! i did, they r a little better now its just mainly my health i obsess about. Mindfullness skills are very handy to use, It takes practise but once u mastered it it is a fantastic tool to have. You have to keep doin it even if u feel silly and it doesnt work straight away. Use something that suits u but my example is a baloon, when i get a negative thought/thoughts i close my eyes and picture myself putting them into a balloon tying it up tight so they ant come out and lettin the baloon float far far away. The thoughts come back later or next day but jus do same again. The thoughts may come back but jus keep doin it. U can use anythin from a baloon, waves in the sea comin in then bein washed away, whatever suites u. Jus somethin that helped me, maybe it can help you too, i hope so. I think i will ask for a scan but i dont know if they will give me one, the gp thinks im mad!! xxx
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Post by winegirl on Sept 2, 2007 18:49:54 GMT
Hi Carlie
I found people would always say things to me like `pull yourself together' or `get up and fight it' like I was imagining it all which used to make me seriously mad! Totally relate to how frustrated you were at your friens comments.
I have been suffering for 15 months without meds, but it is slowly getting better. I have now started a course of prozac to help woth the physical stuff and hope that puts it to bed altogether. But things have slowly improved on their own, and they will for you to.
If you want to oush your GP for a scan then you should. Even if it is only to make you feel a bit more relaxed. Let us know how you get on with it x
Winegirl x
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Post by monica on Sept 3, 2007 9:05:55 GMT
Hi Carlie/Jay
yeah I got the 'pull yourself to gether', 'in my day we just got on with it', ' maybe it's all in your head'. It is hard for other s to believe how ill you can feel, whn your probably look well (I looked v well especially as I lost weight due to stress!), any medical test come back neg - but it is there - lord knows what causes these symptoms and it can take time to recover.
I would say I had this illness for 2 1/4 years, although during much of that time I was recovering. Many of my symptoms went as the antids kicked in for instance, headaches, inability to sleep, tingling, numbness, headaches. The last to go was the pressure round the eye, which went after a good year. To this day if I get v tired it I can feel that starting up so maybe there is some physiological weakness /explanation for that.
I started off on a low dose of anti ds which worked initially, but then didn't so my gp upped it. Apparently the low dose is rarely effective, so in soem cases upping the meds is almost necessary.
I dont' know if you do any exercise or feel up to it, but doing something that gets the old heart goign helped me hugely. Once I started recovering , I did a body balance class (misture of tai chi/yoga) then also started aerobics, swimming etc. I think the release of endorphins was of huge benefit and indeed brought me out of blips, and helped maintain a feeling of emotional and physical well being.
Like you, I found distraction v useful. For me once I started pickin gup going back to work really helped, but anything that can give you a break from the worrying/stress. I fyo find something that helps that - crosswords/sudoku/bike ride/reading /computer games.
I know allthis is easier said that done. But please keep talking. This illness can be so frustrating as it can feel like a long battle but please believe me you will recover. Good luck with the drs appts. Can you find another gp in the surgery?
Love
Monica
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