Frustrated & struggling newbie!

[Lex1]

Hi everyone, so glad I found the website. Honestly don't know how I would have managed the last month or so without it.
Friends and family sympathetic however impossible for them to understand how disabling and horrible PN is!
Had mine 12 months, diagnosed by colorectal surgeon believe it or not, I to used to run, weight train and have a social life.

Initially pain occured on sitting only, despite adhering to life style measures since diagnosis symptoms progressively worsened. Now have pain lying, worse on standing, can sit for 5 min max on cushion. Can only walk slowly on the flat 5 mins, I miss being able to get out for the day with the family. Had a week where couldn't even stand due to horrendous shooting pains and perineal burning aching. felt so low didn't want to be here any longer, kept thinking of drinking the bottle of morphine on my bed side table to put me out of pain for good. Wouldn't do it to the family. Increased Lyrica to 450mg and able to walk about house and garden now at least!

GP been great, supportive, he had never heard of PN but has read up on it now!
Waiting CT guided inj 1st one, I gather reading forums they rarely provide a cure tending to be more diagnostic, does anyone know?
Does anyone know how effective surgical decompression for PN?
Will I always have to avoid prolonged sitting regardless of treatment as my job involved sitting 8-12hrs day?

Thanks

[janetm2]

Welcome and we do understand, so sorry you are at this point. It is good to hear a colon rectal doctor actually knows about PN. You read correctly about the nerve blocks they rarely help but are for diagnosis. Not sure how to answer about surgery since we seem to be lacking in data but I do think it has helped me to avoid the complete downtime and 24/7 pain. I was fading in ability to sit and working less hours before surgery from 8 hours per day to 5. I was out 3 months for surgery and now 9 months post op starting 7 hour days. I only need to get to 8 and hope by 12 months that will work of coyrse that may not be every day as I still go to PT twice a week and acupuncture once and don't always make the full day of work. I use cushions for all sitting and get up every 30-45 minutes for a break even if only to pick up a printout or walk around the office or conference room (we have two hour training on a new version of software twice a week since Jan through March). Work is being as flexible as possible with me. At this point I am not sure if avoiding prolonged sitting is forever but probably would be a good idea to avoid recurrence. I was sitting prior to PNE a max of time because of chronic foot pain so a real challenge to avoid sitiing walking and standing. Just hoping for the best as more time goes by. I lie on the sofa at home now most of the time and sit for meals and some cooking prep work. I am able to go out to eat so that gives some social time with friends. For now limit the sitting while you plan your treatment and I wish you the very best. The surgery section and a success thread may provide more info for you and others will respond with advice.
Janet

[Lex1]

Thanks janetm2 for taking the time to reply. I'm really pleased things have improved significantly for you.
I'm sure many fellow sufferers reading this have been in my position, understanding just how low it's possible to become.
Having better day today.
In process of dealing with insurance companies!! Joy oh Joy
Thanks for advice, have makeshift camp bed downstairs so can be with family and not in bed.
Pretty sure I will have no option other than surgery given my quality of life now as a 37 year old family man.
Not sure I can face the thought of it! Cross that bridge after injections, if I ever get them in Manchester, have to say with NHS cuts looking more unlikely every day.
May have to think about heading to Bristol?
Take care
Lex1

[Violet M]

Waiting CT guided inj 1st one, I gather reading forums they rarely provide a cure tending to be more diagnostic, does anyone know?
Does anyone know how effective surgical decompression for PN?
Will I always have to avoid prolonged sitting regardless of treatment as my job involved sitting 8-12hrs day?

Thanks

Hi Lex,

Unfortunately, we haven't heard of many cures from nerve block/injections. In the published literature, PNE decompression surgery is successful in 65-85% of patients but typically success means at least a 50% improvement, not a cure. So that does not translate into being able to sit for prolonged periods of time. I can sit for 6 or so hours a day now but I typically get up and walk around for short periods of time throughout the day just because my job requires it. Not sure how it would be to sit for hours on end without a break.

Violet M

[Lex1]

Hello Violet

I Think I might be starting injections in next month or so, will feed back outcome!

Hope you don't mind me asking how long post decompression surgery it's taken to be able to sit for 6 hours?
I was under the impression from PN specialist to avoid sitting at all costs, permenant lifestyle changes using cushion only if sitting essential.

Reading the forums I gather as a general rule of thumb if it hurts you are doing harm so stop?
I suppose I am jumping the gun a bit. I would love to get back to my career even if part time eventually and become an active dad again, but I am guessing if I have PNE it could be 12months +

Can all become a little confusing

Lex

[janetm2]

Lex1,
I put in my two cents below as an example to compare to whatever Violet answers.

Hope you don't mind me asking how long post decompression surgery it's taken to be able to sit for 6 hours?
For me probably 4-5 months with the breaks every 30-45 min to work 6 hours and sit probably 5- 5 1/2 hours so maybe now that I am working 7 I am able to sit 6.

I was under the impression from PN specialist to avoid sitting at all costs, permenant lifestyle changes using cushion only if sitting essential.
You are probably right and I am doing this to finish my 4 years to collect my retirement and hoping it does not cause a relapse.

Reading the forums I gather as a general rule of thumb if it hurts you are doing harm so stop
Fortunately the sitting is not hurting with the cushion unless I do not take breaks.

I suppose I am jumping the gun a bit. I would love to get back to my career even if part time eventually and become an active dad again, but I am guessing if I have PNE it could be 12months +
12 months might be a good goal.

Can all become a little confusing
agree!
Janet

[Violet M]

Hope you don't mind me asking how long post decompression surgery it's taken to be able to sit for 6 hours?


Reading the forums I gather as a general rule of thumb if it hurts you are doing harm so stop?

Lex, I can't remember exactly but I know by 18 months I was sitting quite a bit more. My tolerance for sitting has just slowly increased over time but I have to use the right chair and I still use a cushion most of the time. Most of my sitting pain now comes from the sacral/coccyx area, not the perineal and sacral area like it used to.

Yes, I agree that a good rule of thumb is if it hurts stop. Sometimes we get delayed pain with PNE though (like the next day) so you sort of have to watch out for that.

[birdlife]

Lex, it's possible you could just be in a bad flare and the Lyrica - or maybe a combination of meds - might eventually calm it right down. There are other meds you can try to see what works best for you, and have you tried ice for the burning perineum? You could look at triggerpoint massage for the perineum too. There's always hope, as the forum name implies, and am very glad you left the morphine on the bedside table. Some drugs can add to the depression that chronic pain can bring, so hang on in there!

The increased Lyrica dosage has already given you some mobility, you've got a supportive GP on your side (so necessary!), you had a quick diagnosis (so less longstanding nerve irritation), and you have your blocks lined up with Dr.DeMello. With so few consultants treating PN/E in the UK, the wait lists can be a while . Haven't you been given a date yet for the first block? I had mine done in London, for which there's currently a 40-odd week waiting list . The first 2 were x-ray guided and the third one would have been CT-guided, had it ever materialised. Am now due to see the Bristol team in April.

as my job involved sitting 8-12hrs day

8-12hrs sitting a day is bad, even without PN/E. I sat for approx 9hrs a day for 6years and just been told by an osteopath that because of it I have some muscle atrophy in the glutes, also sacro-iliac joint movement due to tight muscles, a tight pelvic floor and very weak core muscles. The human body just isnt made for prolonged sitting. So you very likely have some muscular problems too that are making you more miserable and adding to the walking pain you experience. I self treat at home with triggerpoint massage and its been a boon, but as I've often said on here its a management tool not a cure and eventually you have to find out the root cause. Have you read Andrew's (adg1403) post on the main Board under Surgery, he's had decompression surgery with Dr. Wong in Bristol. He's back at work part time and using one of those rise and fall desks that maybe you could use for your work. At the moment you dont know if you have PN or PNE, and yours may not progress to sugery. Not sure where your exact symptoms are, or whether you have other medical conditions affecting your PN/E too. Am sure you've had a look round the Boards and have got an idea of what else is out there that you can try, specific to your own symtoms. Glad you found us! Take care,

Violet, 6hrs you can sit? That's wonderful, we need a thumbs up sign on here .

[Lex1]

Thanks everyone for your advice and empathy.

Janetm2 - 12+ months is a good time frame for me to have in mind, thanks. I bet retirement can't come soon enough!

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

Bird life - will try ice, where did you find out how to perform trigger point massage, sounds interesting?
- finding this site and having support from all you guys has helped my mood, made me more positive about the future so thanks
- unfortunately no date in Manchester yet for inj, may not go ahead now after waiting 4months,just found out as a result of trust finances. My GP is contacting Dr Greenslade ( Bristol team appear to be well set up) may see him for initial private consultation. Not cheap but worth while.

- Rise and fall desks an option.
- symptoms have progressively worsened especially over last 3/12. Only pain freeish on waking, on standing pain ^ 6-7/10, walking now slow and painful would say 7/10 struggle to walk 5 mins if that. Sitting 5-10 mins on cushion max, pain ^ to point of nearly vomiting 8-9/10. Spend most day lying on right side. Perineal, rectal, genital pain, shooting lt gluteal, medial thigh pain. Can't really go anywhere at moment. Medically fit and well prior to PN, led to depression and now CFS. Specialist thinks constant pain prevents none restorative sleep! Who knows.

Does anyone know of PN aware physio in Merseyside / NW area by any chance.

Regards

Lex

[Anne smith]

Hi lex
So sorry to hear your plight! We have all been there in our different capacities ! You are getting some good advise from these lovely people. What interests me and I think maybe many others is the waking pain free! Who else sometimes ! Most times, wants to freeze that moment. I hate making that urgent decision to get up to the bathroom mowing that getting back to sleep will be impossible. I don't know how the others will feel about this and I know c.f s is a horrid draining thing! But I think the only way I have kept my sanity with p.n.e is to drag your self out of bed and keep functioning even if it only in a kind of a way! Thank god my work is standing ( I'm a hair stylist) if more part time these days. I also am an artist so I work with my canvases on as easel really cranked up high in the air. It's amazing how we learn our way round this rotten thing. Bird life violet and all other s have given me marvellous ideas and every time I get one tiny helpfully tip it makes my day a little brighter! Hope it does for you to
Anne smith