PN- diziness, confusion and other symptoms

[candice-marie88]

I haven't posted on here for a few months but I am losing hope of ever being cured of this terrible illness. My life is a mess and I don't know how much more of this I can take. I am trying to think positively, but this is becommin impossible as further symptoms continue to develop.

I have never even been diagnosed with PN or any disease regarding the pelvic region, however, I have suffered from the symptoms of PN for 4 1/2 years. During this time I have had the odd months free of pain, but it always returns just when I start to feel I can move on with my life.

It came back in March 2011, although the pain seemed relatively short lived, but I developed a number of additional symptoms: dizziness, confusion, blurred vision, headaches, all over tingling and I have since been extremely forgetful. These synptoms all started after I had a fall where I was unfortunate enough to hit myself in the crotch area

These last few days I was speding time with a few friends who came up to visit and we have done a lot of walking, this was a HUGE mistake as my PN pain has returned and is currently unbearable, my whole body is aching and in pain, I feel tight everywhere and my heart is thudding so strongly.

Does anyone else suffering from PN feel like this and feel their heart thudding like this? It isn't fast, just feels very strong when it beats, more than usual. and the other synptoms I mentioned above, dizziness, confusion etc. This must be soemthing to do with my CNS, I do feel extremely ill sometimes.

I have been to four different doctors all of who say my problem is psychological, because i suffered from anxiety in the past, so they have all put it down to that and ensured me nothing is wrong with me. I told them all i think I have damaged my nerves, but they all dissagree. If I found the help i needed right at the start I really believe I would have healed and been able to live my life and be the person I used to be- the person who loved life and those in it. Now I have lost most of my friends and don't have brilliant relationships with family members because of being so so jealous of their perfect lives and I find it extremely difficult to accept that I'll never be like them. I'll never have a good sex life or a boyfriend who understands, I'll always be alone and miserable. I am 23 and I have lost some of my youth to this. I used to be active, i enjoyed walking, swimming and riding my bike- not i can't do those things and I have gradually put on weight. I was proud of my body before this started, I had a boyfriend who i loved, but he broke my heart because we couldn't have a proper sex life. The thought of not having sex makes me want to die, and the frustration is too much, I become aroused so often, I have not had an orgasm in three years.... how can i continue like this... i just want to be a normal functioning person.

Other people don't realise how lucky they are, they will never understand what I am going through, no one around me does. If I had guts I'd have been dead a long time ago, but I'm still here because i'm scared of death... but I don't understand why if it means an end to this pain and suffering.

Thanks and sorry for rambling

[janetm2]

Candice-Marie,
Welcome to Hope and so sorry to hear your story and troubles with doctors. Although I don't have the same symptoms I wanted you to know I share some of the frustrations with the devastation of this illness. It is my most challenging of my 50 years. I saw your post in the UK section and that someone early on asked about referral if you scroll towards the bottom of that section but with your case of not havinng a current doctor behind you others on this site may have some other input so I am just noting this here and leaving that post open. There are many people here on this forum to guide you and have been involved longer than myself, please hang in there so they can respond. We care and are here for you. Best of luck and take care.
Janet

[calluna]

Hi candice

First of all - I've just answered your other post - I really hope that you are getting some help.

If you look through the information pages in the main part of the website here, you'll find that there is a lot of information about the management of this condition. There are lots of things that you can do to make yourself more comfortable. Have a read through the FAQs as well.

I think that we all wish that we had found the right help, right at the beginning. You are not alone in that! Unfortunately it rarely, if ever, works out like that. Most of us have had a long journey to get the right diagnosis. Even those of us - like myself - who got a diagnosis right at the beginning, haven't always had the right treatment.

So please don't look back, it is not going to help at all and it will only make you feel low. Here we are - and now we move forward. No point in looking back.

My best help has been three things.

One - this website, making the lifestyle changes which I found out about here.

Two - this book. It is brilliant. I started off with a copy from my local library and now I have got my own copy. It was recommended to me by the psychologist who I saw at my GP surgery. I have recommended it on here before and I know that other people have found it helpful as well.

Three - CBT. Again, the psychologist whom I saw at my GP surgery. I was very unhappy and depressed with the pain, she taught me CBT which has helped me so much with pain management, it has pulled it all together really. If you don't have access to a CBT course locally - ask at your GP surgery - then this book is excellent.

I won't tell you that I know how you are feeling - because that wouldn't be true - but I can hear how unhappy you are, and how distressed you are. I am so sorry that things are so difficult for you.

Please get some help, candice. The fact that you are thinking of death as an answer - that's not good. I'll say it again - I really hope that you are getting some help.

NHS Direct is 0845 46 47 48; Samaritans 08457 90 90 90

x calluna

[helenlegs 11]

Your first step here is to look at the home pages that Calluna indicated and get a referral to a doctor who can help diagnose PN. Take the letter for medical professionals from Hope and/or list of symptoms to your GP and circle all of your symptoms that correlate with that document to show that there is a good medical indication for a referral.
I had the most stubborn, unhelpful GP and managed to be referred.
I always find that being proactive gives me a degree (several, actually) of hope instead of despair.
Finding medication to help alleviate symptoms will also help, there are many discussions on here about what has helped others, but obviously you would need to discuss any changes etc with your GP too.
Because this problem is not recognised most of us have come up against seemingly insurmountable brick walls along the way, but with practical and emotional help from the forum these problems will get sorted.
Take care

[Karyn]

I have been to four different doctors all of who say my problem is psychological, because i suffered from anxiety in the past, so they have all put it down to that and ensured me nothing is wrong with me.

Hi Candice,
I'm so very sorry you're having such a hard time. NO! This isn't all in your head and you're obviously not fine. I hope your GP is willing to work with you for a referral to a PN Specialist.
Are you being (medically) treated for anxiety? I ask this because:

It came back in March 2011, although the pain seemed relatively short lived, but I developed a number of additional symptoms: dizziness, confusion, blurred vision, headaches, all over tingling and I have since been extremely forgetful. These synptoms all started after I had a fall where I was unfortunate enough to hit myself in the crotch area

While it's true that these particular symptoms could occur from anxiety, it more sounds like side effects from medication. Are you or have you been taking anything?
I sincerely wish you the best and please let us know how you make out with your GP.
Warm regards,
Karyn

[candice-marie88]

Thank you all so much for your replies.

I used to take 20mg of citralopram for my anxiety, but I have not been on that medication since before christmas 2010, so the other symptoms are not side effects of medication. About three years ago i started having sharp pain in my legs, arms and head whenever I had PN symptoms, which were obviously linked, because there was no other reason for the other pains, and they were nerve type pains.

I researched sensory neve damage and my other symptoms (vibrating, pins and needles, dizziness etc.) matched some of those, so I am pretty sure that I have sensory nerve problems aswell as PN. I'm also convinced that the PN has caused these other horrible neve feelings as there is no other explination. I am not sure how to tackle this now, I know I need to print off information and I will, but I can't show my GP PN symptoms and also sensory nerve ones as they will be too overwhelmed with information.

I read that tricyclic anti-depressants were helpful to nerve symptoms, is this the case with PN too? I need to ensure my doctor prescribes me a suitable medication to help ease these symptoms, but I don't know how to approach this subject.

I am registering with another surgery anyway, so hopefully this will be a fresh start and I can find a helpful doctor who can help me. Surely they can't ignore my problem if i continue to go back, and once they realise they can't help me I will get the referal I need.

I am feeling very low, my whole body feels achey and I am so so depressed about this.

I was wondering is anyone could tell me any relaxation techniques I could use, I would like to try PT, but I'm not sure how to go about that and it would be helpful to know anything i can do in the meantime.

Thanks again.

[calluna]

Hello again candice

I can indeed tell you about relaxation techniques - the book I recommended earlier - Coping Successfully with Pain - has plenty of useful stuff about it, and tells you what to do. I really do recommend this book, I refer to it a lot myself.

With regard to PT - here in the UK, physiotherapy for PN is not something you'll find easily. Your route to getting some physio would be by getting a referral from your GP. Please make sure, though, that your therapist is PN aware. There are plenty of people on here who've been actually made worse by physio.

And yes, TCA's (tricyclic antidepressants) help with neuropathic pain, and are invariably the first medication which is tried - once your pain is identified as coming from a nerve, then I am sure this is where you'll start. Lots of people get good pain relief with quite low doses.

How to approach the subject with your GP - I'm going to copy and paste what Violet said here, because she said it really well. Here it is -

Hi Candice,

When you go to your GP, take a print-out of the HOPE fact sheet . Tell them you have many of the symptoms on the sheet and ask for a referral. Try to be matter-of-fact and assertive when you go -- and take a friend or family member you trust with you to give you confidence. Take a list of what you want to say and the points you need to get across, focusing on the physical PN symptoms and not the emotional stuff. Good luck -- you can do this.

The only thing I'd add to this, is that it might also be a good idea to print off the Pain Scale as well, so that your doctor knows what you mean when you are talking about your pain levels.


Let us know how you get on, ok?

[helenlegs 11]

Hi again,
I think it may be best to concentrate on the PN symptoms, you will have the back up of the printed literature from here, and as you say much more may be overwhelming.
You may then find that you get on well with your new GP and can introduce other problems later. If the problems are related as you think they may be, addressing the PN problems could help everything simultaneously anyway. Feeling depressed and fatigued is often a consequence of being in pain, I'm sure your GP will understand.
Yes,anti depressants are often prescribed for nerve pain including PN, I used to take citalopram although I take cymbalta now which I find works a little better for me.
Make an appointment asap, I think as soon as you do, you will find that just actually doing something positive will help a little Good luck

[Torbjorn]

Hi Candice I know how you feel , I am constantly dizzy forgetfull, sleepy, in pain. absouloutly everything you talked about. At times I feel as if the world has come to an end, then I usually pick up again and its ok again. The one thing I have noticed is I have t pace myself. Lots of rest, lots of heat packs abd lots of movies. That is my answer when the pain is so bad I cant think of anything else. Another thing that helps is my diet, I dont have anything acidic, And have only realised in the last few months that Gluten affects me. I do take Ativan and stilnox. This gets me throught the night. I Have just joined the group .I was so sad to read your email, but I think you have put into words what many of us feel from time to time. I really hope you get a good doctor. Dont take to heart about your friends and family. The one thing this condition allows you to do ,is find yourself. So use this through all the pain, find you.This condition gives us all one thing , that is time. Time to lie down , time to think, time to contemplate.You also have youth on your side. They are finding out things more and more. Who knows what is around the next corner for all of us. The one thing that we are is pioneers, and that is the thing we have to do best. We must help find answers for ourself and our future generations to come.Please Please pick up your phone and call someone near you in a support group or chronic pain group. YOu will make friends there that understand you. As for your family members, dont wish this on any of them, we have to rejoice in their good health. You never know what is around the next corner for anyone.Hope you start to pick up your phone and reach out to a support group in your area. good luck. Helen xPs sorry about the spelling and grammar, im in bed with chronic pain, so am writing this with a heat pack on, a good movie in the distance, a nice sweet weak cup of tea,and my favourite bag of gluten free pop corn. Will probably eat the whole bag as my pain meds make me hungry.ha ah

[candice-marie88]

Thanks again for your advice.

I am due to move out of home and back to university in two weeks time, so I am registering with a new surgery over there.. it’s just the wait that’s getting me down, my local doctor won’t help me and I have seen all of them in this practise (I live in a very small town) and last time I visited I was told not to return for at least a month- obviously a sign that they are becoming sick of the sight of me.

I found some of my medication which I was taking a few months ago- 20mg citalopram, I also have some packs of 10mg so I have started taking 30mg a day to see if that helps me with my pain- so far no change and my symptoms have become worse. I am now suffering from extreme and strong aroused feelings which I can feel all through my body… they’re worst in my genital region and my thighs/legs/feet.. this is also creating a sickly feeling which travels up to my head and is causing me to feel like I can’t breathe… I keep feeling as if i'm about to have a massive orgasm and this is so uncomfortable and frustrating, causing further pain!! Anyone else had this and Is this harmful??

I am printing of all the information you advised me to and taking it with me when I see my new GP… I will spend time planning and rehearsing what I am going to say… only problem is I don’t have anyone to bring with me for support. I have started making a daily pain scale… is it best to rate the pain 1-10 throughout the day, eg. Morning, afternoon, evening, night. Hopefully because I will be living in a large city, the doctor will be more willing to refer me, and it will be easier for me o travel to see a specialist.

Are there any PT techniques I can practise myself, to relax my pelvic floor?

Thankyou