New...scared and need advice please!

[calluna]

I think you said that De de Mello thinks this may be muscle related? If your pelvic floor, or other muscles in the pelvis, go into spasm, that will hurt. And it can also pinch nerves and cause them to hurt too. It is all very well to take pain relieving medication but it would be better to remove the cause of why it is hurting in the first place - and that's why you're going to physio.

So if it is muscle related - and I'd trust Dr de Mello on this - then you could well have both muscular pain and nerve pain.

It is hard to tell what sort of pain it is, going by the way it feels. Neuropathic pain can feel like all sorts of things, ranging from the electric shock zap sort of thing through to a hard solid ache or burning .... not usually tingling though. But all things are possible!

You did get good pain relief initially from quite a low dose of gabapentin. This stuff won't do a thing for any pain other than neuropathic, so that says that one component of your pain is from a nerve. Also it is perhaps worth knowing that most people don't start to get any relief until the dose reaches 1800mg, many people need to go to 2400mg or even 3600mg. So you've got lots of leeway there.

I would just say - of course - don't alter your dosages at all without discussing it with your doctor first. Very important.

Have you tried ibuprofen at all? It ought to help with muscle pain.

With regard to people who have recovered, the vast majority of them don't hang around here once they are better. You'll find lots of us on here for whom things haven't been so straightforward - that's why we're still here, we've had to go the surgical route, or we are still finding what medication works. Do have a read through the Success Stories section, though. Otherwise it is easy to get the impression that nobody gets well, but that's not the case at all.

As I've said before, your age is in your favour, as is the fact that you've been seen by a PN specialist so early, and that you are getting into treatment promptly. And until the underlying cause is resolved, there is effective pain medication available, it is just a case of finding what works for you.

So an attitude of cautious optimism would be the thing to cultivate, I think.

Hope all goes well tomorrow, we'll be thinking of you.

[HerMajesty]

I'm a little concerned about the diagnosis here. Has Cauda Equina syndrome been specifically ruled out?

[Jessicac]

Hey her majesty,

I am very concerned I have just read about the syndrome and I am worried I could have this! What do I do?! As doctors are suggesting PN but i am seeing a spinal surgeon on Tuesdays! So worried now?

Jess

[calluna]

I'd certainly hope that it has already been excluded. Have your reflexes been checked, Jessica?

This is from the GP website, patient.co.uk - about the presentation of cauda equina. I have copied and pasted -

Low back pain, with pain in the legs and unilateral or bilateral lower limb motor and/or sensory abnormality.
Lower limb motor weakness and sensory deficits: usually asymmetrical weakness with loss of reflexes dependent on the affected nerve root (increased lower limb reflexes and other upper motor neurone signs such as extensor plantar responses may indicate spinal cord involvement and exclude the diagnosis of cauda equina syndrome).
Bowel and/or bladder dysfunction with saddle and perineal anaesthesia.
Urinary dysfunction may include retention, difficulty starting or stopping a stream of urine, overflow incontinence and decreased bladder and urethral sensation.
Bowel disturbances may include faecal incontinence, constipation. Rectal examination may reveal loss of anal tone and sensation.
Sexual dysfunction.

There is a substantial overlap with other conditions of course - for instance many of us can put a tick next to the all of the last three things on the list, and also to low back pain.

You mentioned that you cannot stand for any length of time - is this because of pain in the legs, or because your legs feel weak, or go numb?

If you are seriously worried, I'd suggest you call NHS Direct 0845 46 47.

[Jessicac]

Thanks calluna you have been great helping me! And thanks to others too.

With regards to the pain in legs, I don't have any pain in my legs as such, the pain from standing is not in my legs it is in my vulva, as it starts to ache from long periods of standing and walking around. This to me though does suggest some type of compression.

Also I do have difficulty with urinating but that is on a off, also with the bowls it's that I never feel like I need to go, therefore becoming constipated as a result. And I do have buttock numbness but that is on and off as well.

So I am not really sure what is going on, hopefully this spinal surgeon will know. Dr de mello has never mentioned this syndrome andi myself have heard of it until now.

Thanks again everyone

[HerMajesty]

It sounds like you are about to have exactly the appointment you need. I think if you ask the spinal surgeon whether or not he is able to rule out cauda equina syndrome, that should be very productive. He's in the right specialty to understand it, and i believe it is more common or at least more well known than PN.

[Jessicac]

Thank you giving me knowledge about this syndrome. You wouldn't happen to know whether if I did have his syndrome that it stands a better prognosis then PN? I have only had these awful symptoms for 6 months and hey literally came from now where. Although the neuro specialist I am seeing who specialises in PN seems to think that the bulge in the l5 is not conclusive enough to be causing my pain! I am glad my GP pushed for the referral for the spinal doctor now though!

Really appreciate your posts! I felt so alone in all of this with little info before this forum

[HerMajesty]

I think the prognosis gets worse the longer the nerves are compressed, and in the grand scheme of things 6 months is not bad. I had cysts in the sacrum at S2 which were impinging on the cauda equina so it had similar effects to cauda equina syndrome, and because of delay in diagnosis and treatment I literally did not have it corrected for years.But post-op, I am improving. If I had it taken care of 6 months after 1st symptoms, I think the outcome would have been fantastic. I don't know the actual stats for prognosis, but I think you should be encouraged by the relatively short duration of your symptoms.

[Jessicac]

Yes I can understand how symptoms would get worse with further compression oh no, I am so sorry to hear that but I am so glad that you are improving that's always a positive! I am very worried myself now over this syndrome. However my symptoms started out as burning in the vulva, which then further turned into an ache in the rectum and vulva, my lower back pain has currently gone and was only ever mild at 2 out of 10 to begin with, absolutely nothing compared to the pain in my vulva which can be 8 and 9. It is only recently that my urine retention has occurred and that is also on and off, along with my bowels. I am getting really worked up over it, I am trying to reassure myself till my appointment on Tuesday.

[ezer]

You say that you are in the UK but you keep posting at all hours of the night if you are indeed in the UK timezone. You need sleep management.