I have PGAD along with my PN type symptoms. How do I cope???? Drugs, TENS and magnesium.

[66crusader]

At the moment I feel lost at sea with all this, and I am finding it very hard to function mentally I just feel panicked by it all.

I don't think it helps that I am perimeno, but this constant feeling of arouseal is on the verge of having me admitted to a physciatric ward. I have been prescribed Amatrpityline, which I haven't taken yet as really scared of these drugs, and my research suggests that this can bring on PGAD anyway. My legs feel so weak and aching from all this, I would imagine anxiety isn't helping,

There is also Duloxetine and gabapentine I could try, my problem is I react strongly to drugs, and I have a business to run which I am just managing to keep going. I spend far too much time crying, and if it wasn't for my husband and three daughters I do wonder what's is the point.

Perhaps some of my problem is I am finding it hard to accept, that there isn't something more simple going on, and can you be on the drugs for say three months and the problem has gone.

Sorry to be a moaning mini but I feel so isolated with all this, and am scared the drugs will make the PGAD worse, and of the side effects of them as to whether they will tip my mental state over the edge. Perhaps I need HRT instead to lift my mood which would help me cope better, as it is known that so many women are put on antidepressants when they are going through the meno, when they actually need HRT.

I have brought a TENS where would I put the pads for , PN and PGAD, one last I see some people mention magnesium for nerve damage how much should I take. Many thanks.

[66crusader]

Also want to add I had the PN for six weeks before the PGAD started, I was put on Prozac which made me really ill I only stayed on it for four days, and that is when the PGAD started, after just four days. So I am very nervous of the drugs, been doing research and another lady started with PGAD after three days.

I wonder if it is a bit irresponsible, being prescribed amtriptyline with the PGAD , with the know potential side effects , that it could make it even worse.

[tellie5044 in reply to 66crusader]

Hi Im the lady that got PGAD after only 3 days on an SSRI called Cipralex, its similar to Paxil. I still have PGAD. I know mine is not from PN but is deffinatley PGAD induced by the SSRI. It has gotten better and at first it was unbearable. Now I am doing pretty good. I still have it but it is mild most days. I was sad for a long time and am now trying to accept it and move forward. I know I may never be cured but I am still living and am keeping strong. I currently take gabapentin for it and have since it started a year and a half ago. I feel it helped but now I am coming off it as my pgad is mild and it hasn't made the PGAD increase so maybe it was doing nothing for my PGAD and it got better on it's own. I pray for a cure oneday, like it will just go as quickly as it came. So you were on paxil when it started? What were the symptoms? Do you get that annoying pelvic floor muscle contraction or twitch? I have just that left and no arousal feelings anymore just the weird restless twitch. Its got to do with dopamine as I also have restless legs syndrome and over active bladder that started when the PGAD did only 3 days into the Cipralex. Let me know how you are doing now and what treatment has made you better if you are, I pray you are.

[marom in reply to tellie5044]

Tellie5044, How much gabapentin do you take ?

[Emmax]

I saw a message you put up another time and had the intention of replying and am not sure whether I did or not so I hope I'm not repeating myself.

I spent three years in a blur of pelvic pain, terrible aching legs, headaches. I did the specialist route of tests and drugs. I ended up on every drug you have mentioned. I tried magnesium and every alternative treatment I could access including tens. I had nearly 10 nerve blocks (mainly unsuccessful) was told I needed decompression surgery in France. Thankfully for me I didn't go through with it. I researched and flew to San Francisco to Stephanie Prendergast who is a in my opinion legendary Physiotherapist. I spent a week with Stephanie who I can honestly say nailed my pelvis pain by 75 %. My lovely physiotherapist in London Helen Keeble maintains me, she is very experienced and familiar with Stephanies methods. I am now off nearly all the medication I was on except Duloxetine. My main issue is because I spent three years with hellish pain, I have been left with terrible chronic pain. I do have the odd flair of pelvic pain attacks but nothing like I did. The main things that have helped me are my incredible physiotherapist and hot water bottles! I hate the drugs but Duloxetine has helped my fatigue, aching (including legs) and general daily pain. Because it seemed to wear off for me midday I take 30 in the morning and 30 after lunch.

I spent three years curled up on the sofa, I am now up and functioning almost normally in the eyes of friends.

I must say, I am down because I feel terrified that I will be left with chronic pain forever but am very grateful for how far I have come. A friend who successfully maintains her self with Fibromyalgia and has similar symptoms said once she was strong enough she started running and it really helped. There is no way I am up to running but I am now trying to walk everyday. No more lunches and coffees with friends, they all have to walk with me. I have three years of weight to drop and it really gives me a boost each day.

I realised I have typed a whole essay without saying what I actually have!

I had a horrific birth, face presented baby, they fractured my sacrum, I had nerve damage, two years of rehab physic. Years later I started having terrible pelvic pain, spasms, felt like I had a tennis ball in my bottom, aching legs. Initially I was admitted to hospital and put on a morphine drip, a dozen tests and investigations, nerve blocks, a pile of specialists who said I had everything from irritable bowel!! to PN.

I now know I have Non Relaxing Pelvis Floor. My traumatised old pelvic floor goes into spasm. When the muscles contract they apparently can put pressure on nerves giving nerve pain.

I found intensive physiotherapy (daily for a week) was needed to try to break the pattern. I now only go once a week for an hour as it is so costly and add on a session if I have a flair up.

I hope there is at least something in my long story that may help you or someone out there.

Wishing you the best of luck in your search for relief. It is unfortunately usually a long road to recovery but don't give up.

Take care, Emma x