Hi John, and everyone else who has posted.
I don't work. I had been on sick leave because of PN and PS but was made redundant when the company folded, so I haven't had much choice in the matter. Given my list of problems, sitting due to PN and standing, walking, and sitting because of PS,I can't think anyone would give me a job, I would never make employee of the month
wouldn't last that long.
I do admire those of you who do work and I would advise
everyone to stick at it as long as possible.
I have felt so guilty that I am unable to contribute financially. My husband has had to work a 6 and 7 day week.He has been a star, although even he didn't really 'get' my situation altogether. It was fine at first, I was told my
soft tissue injury would get better within a year and as I don't give in easily I expected to be at least partially recovered well before that. Of course it didn't happen but with no actual diagnosis things were financially and emotionally strained. Getting that diagnosis helped.
Not financially unfortunately. I have been refused every benifit applied for. I have a tribunal in January, nearly 3 years since the onset of my symptoms, where I can "state my case". I have tried to do just this every medical and interview I have had but they have simply ignored all PS or PN documentation I have submitted to them. Just because it is rare there is no reason to be rude! I can not wait for the tribunal. I am allowed a representative but who? It would take me all of my time explaining it to someone else, it might as well be me.
Because my husband does work I was told that I was a
housewife . . . Oh to be a lady who lunched,be able to sit through a hair appointment and then have my exquisitely manacured nails re sharpened so I could poke them in the eye. . . . .
I have just read a post on a different thread by Catherine and I hope she won't mind if I quote her here but it is relevant . . . . . . .
My advice to anyone is: Don't give up. inform your doctors of this website. if they don't listen find one who will. Keep moving. don't overdo things, Rest when you can, Fight against depression. Find a good pelvic floor physiotherapist. Ignore negative comments from others.
Keep working if you're able. Even if it's part time. Approach your HR dept. and ask to speak with a Health & Safety Rep. I'm fortunate to work for a large company who value me as an employee. They allowed me to have as much time off work as I needed. I ended up being away for 2 years. I was then allowed to come back to work at my own pace. 1 hour then 2 hours etc. If you can't work, apply for Disability payments. If you're refused, try again. Get as many medical letters as you can from your doctors to support your claim. Don't waste time going to Doctors who know nothing about PN. Go straight to the docs. who do know. It will save you a lot of time, effort and money.
She is so right ,it is very easy to fall into the pit of self pity. We have quite a lot to feel sorry about but the distraction of work can be a saviour if it can be tolerated. Finding a diagnosis and then treatment can be a job in itself. Especially being extreeemly
thick now with the fug of er, em, what's the word again. . . oh yes medacashun . My distraction is my Mam. She has late stage Altzheimers and still lives at home with my dad.I go 3-4 times a week, and I know that we would not be able to have her at home if I worked, even part time. She would not survive well in a care home so my enforced unemployability has advantages.
Oh and Tracy, I have not heard anyone mention swollen ankles before but I get them too. I have put this down to piriformis, not sure you suffer from this but my ankles swell in direct corellation to the sciatic pain build up associated with PS.I have this bilaterally but the rh side is worst and that side ankle is the fattest too. I know, thick head, fat ankles . . .attractive !
Take care everyone,
Helen.
But this pain leaves me hesitant to show my interest. 
I've been reading everyone's postings and they leave me scared to start a relationship. I do appreciate all of the information that everyone here is posting though. Because of your experience I'm becoming a better, stronger patient, that will get the diagnosis quicker because of all of you. I too hope to be the inspiration for future patients who sadly, experience this. By banning together we can educate those around us including the medical community!!