pubendal neuralglia/ fybromyalgia or just as mad as a bag of spiders?

[limpingbint]

After the birth of my third child (who had his hand above his head!) I have had a really painful lady garden.... also at times terrible hip and leg pain. I have been to the docs and started physio and have now been referred to a neurologist. The thing is I have had a good deal of pain in other parts of my body, all over the place in fact and if i so much as knock something it is painful for ages after. I haven't really told anyone about this stuff, in fact I only told DH last night as really scared of seeing the neuro on Wednesday. I haven't said anything because it has been going on for the last 2 years or so to varyin degrees at different times but at times it is really disabling and is getting me down. Also there is the impact the painful ladybits has had on how I feel about myself as a woman. I know this is a bit of a rant but I have been in a massive denial frame of mind about this as a mother of 4 with two ill kids a toddler and a new baby it is a pretty scary prospect as this seems to be getting worse. I have lots of other little things going wrong too which wheh i googled last night (yes i know i know) it was looking like fybromyalgia - honestly i am scared. I have been hiding this for ages and am seeing this doc and have to tell all for the first time. I wondered if any of you had this experience and it was all ok in the end..... sorry for the rant but really frightened now i have told DH and seen his reaction

.........

Anyone?

Don't be scared, let the neurologist check you out and see what he or she has to say. It's unlikely you are mad but there are many other things it could be some of which are very easy to treat (such as a vitamin deficiency) and some of which require surgery or medication but can be kept manageable.

If you can cope with doing it then try to keep a diary of any symptoms you have just to keep track of things and to have them on paper to look back on and for the doctors to see if they wish.

I have had similar problems and nearly 3 years ago (aged 30) was diagnosed with spina bifida, tethered spinal cord syndrome and chiari malformation (all neural tube defects in the spine) - it's unlikely you have the same but I mention this because I know how scary it is trying to find out what is wrong.

Hang in there and be gentle with yourself.

Thank you for yur response.

I think I am quite shocked about it all because I have spent so long just telling myself to pull my socks up. I know there is a problem with my pubendal nerve and that's not good and it really quite painful. My DH looked so completely horrified when I told him the full extent of the symptoms, part of me wished I had said nothing but of course I am now scared that not seeking treatment will mean I have a poorer outcome. I am just a hardcore coper type of person and this is almost an affront to my personality type iykwim? I have never felt so weak in all my life when in reality I need to be strong, so many people rely on me and before now i have always felt before this time i could do ANYTHING. I am not sure how one comes to terms with being such a different person.

Hi Limpingbint,I'm sorry that you are suffering this. I'm on the drug Lyrica for pain relief of pudendal nerve pain and it works most of the time. It takes a few months to kick in properly and your body adjusts to the tiredness. I think that you should take it easy on yourself and try not to bring on more pain by overdoing things.(difficult with kids) 2 years is a long time to feel pain and some medical professionals believe that pain patterns are set down in the brain and need to be interupted by drugs or tens machines for a while to stop them. I hope you get your appointment soon and get your pain under control with proper treatment. I understand the way you are feeling as its very familar. Many professionals told me two years as the adverage time for this pain to ease, so hopefully it will be the case for you.

Just searching for post viral and pain and saw this.
OP just wondering how you are, hoping you feel stronger and that things are ok x

Went to see the Neuro today and he is testing me for MS!!!!!!!!!!!! I have to have a full spinal and brain scan and am now shitting myself to be honest. He said the symptoms I am having could not be caused by my sons birth and I have no feeling in patches on my back. leg and foot so he has to check. Fuck me,,,, not at all what I expected to hear. I have 4 young children the youngest of whom is 5 months.

Hi there -
MS isn't a life sentence - there are different types of MS. One type is progressive but there is another type that you just need to learn how to manage. I have a friend with M.S. who has a young son and also holds down a full time job - she manages her condition with relaxation techniques and meditation and yes she has relapse periods but she also has times when she feels well and fit and healthy. I'm not an expert but just wanted to let you know that even if you are diagnosed with MS it doesn't necessarily mean it is the end of your world. Whatever the results are the most important and hardest thing is facing up to the fact there's something wrong - which is what you are doing - then taking a deep breath and saying - OK now what am I going to do about it. I have lived with M.E. for 15 years and havea young son and a job - I've just had to learn how to manage my condition rather than running from it.
Good luck and don't be scared!

Ember, thank you and if this were you I would be saying the same. I have been taking the 'pulling my socks up' option for so long this has come as a huge shock. I am trying to be calm because we are going away for half term thus delaying the scan (they could do it Monday otherwise)but woke up in the night almost unable to breathe with panic and have had a few tears with DH too - whatever it is it is really affecting my life and is changing everything - I think i have to give myself some time to adjust - running away from this has worked for me for a long time and now i have to face it, whatever it is. Trying to be 'in the moment' rather than projecting forward as that is scary and unknown

I have to say I did run away from my condition for at least 5 years - including travelling to Mexico and climbing several pyramids when I could hardly walk - so I know its much easier said than done! I just feel so much calmer and happier now that I'm honest about my symptoms - and healthier too cos I'm doing all the right things for me. It does take time and adjustment but there are lots of people doing it who can give help and advice and support. When you know for sure whats going on you will feel less anxious I'm sure - its the fear of what could be that is often more overpowering than the reality.

Thank you yes, the fear is really quite overwhelming. My Mother died of cancer about 8 years ago (actually it is her birthday today) and she was dreadfully disabled during the journey of her illness, completely unable to move for a lot of it. I know that a lot of my fear is coming from watching her experience that and being in absolute fear of something similar happening to me, she was a very healthy non smoking non drinking woman in her early 50's. It took me all that I could muster even to be honest with DH about all the stuff that has been happening to me - I personally very worried about him seeing me differently.... again projecting into the future is not helpful to anyone. I am booking the MRI tomorrow I think, I am dreading it tbh, frightened I am going to make a fuss and cry - that said I am sure I would not be the first person to have done this or indeed the last. Ember you have been terribly kind and your advice and words are appreciated.