Frustrated & struggling newbie!

[Violet M]

Violet M - any particular chair you use / chairs you know of?

Lex, what works for me probably wouldn't work for you because now I mostly have sacral issues rather than perineal. I use a straight back chair like this http://www.hon.com/Products/Chairs/4615.aspx

hon tiempo rolling chair.jpg (7.91 KiB) Viewed 628 times

and I use either a roho cushion or just a cheap egg-crate cushion in it. Insurance paid for most of the roho cushion.

I'm sorry you are pretty much stuck in bed. I used to be that way and couldn't walk or stand much either. For a couple of years I had a lying down computer set up that kept me from feeling totally useless and isolated. Please don't give up because you still have options you can try. Just keep fighting until you find what works for you.

Violet M

[birdlife]

Bird life - will try ice, where did you find out how to perform trigger point massage, sounds interesting?

People know a tight piriformis can pinch the sciatic nerve, but the pudendal nerve lays beneath too and this set me off on the road to self-treating. After reading a link online between triggerpoints in a tight pirifomis muscle and the subsequent pressure a contracted piriformis can put on the pudendal nerve that lays underneath, I bought Clair Davies's Triggerpoint Therapy Workbook from Amazon.
The book is self-explanatory, covers any pain in the entire body including the perineum. It's split into sections for you to look up wherever your pain currently is and self-treat according to his very clear and detailed instructions. I knew zilch about muscles when I started his book, certainly know quite a bit now! Initially I needed help from a physio (4 sessions) with the piriformis as it lays underneath the glutes and is harder - but not impossible - to effectively massage yourself when it's really stiff. Once he'd freed it off a bit, I continued at home. I had 15 other lumbar, pelvic and thigh muscles which I self treated from the beginning that were excruciatingly painful and tight because of TP's in them. The more you sit and lay the more TP's you'll trigger due to the inactivity. Hope it helps you as much as its helped me, PM if you need any more info.
Good luck with Bristol, might see you there!

[Lex1]

Thanks Birdlife and Violet

I will look into the TP massage, as you say muscles will tighten if not used.

I keep pushing everyday, can't afford to give up. Is it just me who finds other people's lack of understanding frustrating?
Work colleagues, though well meaning suggesting we all go out for a meal and drinks to keep me in the loop &cheer me up!
What do they think I am off sick with? they know I can't sit, I now have an airbed so I am comfortable down stairs with the family. I have directed everyone to website who listens, My GP is using the leaflet for his appraisal.

My mood has picked up a bit, obviously due to me being slightly more mobile! I have decided that
I will be happy if I can get back to part time work, walk comfortably and be able to spend a day out with family, perhaps a holiday. Anything more being a bonus. It's amazing how you miss the simple everyday things.

Anyway I have an appointment with Dr Greenslade on Thursday 1st March in Bristol. Paying privately for one and half hour consultation, not cheep but sounds V thorough. Secretary was brilliant, checking how I was getting down to Bristol and suggesting car travel tried and tested methods, pain diary ect. Will post how I get on, wish I could afford private treatment.

May well see you there Birdlife!

[birdlife]

Is it just me who finds other people's lack of understanding frustrating?

I find the most annoying thing is being asked how my 'back' is , despite clear evidence of cushions with large holes in the middle. A clue wouldn't you think? Evidently not!
Glad you're feeling more positive, and excellent you're seeing Dr. G this week! Wish you all the best. I'll miss you by a month as mine's not till 11th April. Maybe bump into you on a follow-up appointment though . Have a safe journey ..

[Lex1]

Hi Birdlife

Funny you noticed the number of people who ask how your back is, they just don't get it!
LOL!

I bet others many others face the same comments!

Another one I love is 'your looking really well!' either intimating the pain is all psychological or just genuinely trying to cheer me up, difficult to tell sometimes. Do they think anyone would possibly invent something so socially isolating and disabling?

They only see a snapshot of my daily struggle, they tend to see me for half an hour at home when I have been lying down for a couple of hours so as to buy some time for visitors! Sure many share that sentiment.

I Wonder what silly or annoying comments others have experienced that made them roll their eyes?

Will have a safe journey thanks Birdlife, just need to collect my seat belt exemption from GP and have a practice / Sus out best position in car

Lex

[calluna]

I have a reply that works for me, when people say in disbelieving tones - but you look so well! I just take it as a compliment, and say thankyou.

Hope you get on well with Dr G, he is a nice man, very kind and easy to talk to.

[Painful Man]

Could not resist joining in on this one.
For the umpteenth time I was asked today how my back was, despite the explanations, the cushions etc, plus the other day 'twas said "But he looks so well!"
They should see my passport photo from when I went to the booth forgetting to take a cushion! Well, I suppose I should take the latter comment in a positive spirit.
I see much talk of Dr.G. in Bristol. I saw my new GP last week and he said he would refer me. I'll post more detail on the UK forum.
My sincerest wishes for relief to all sufferers.
P_M