Drat my sacro-iliac joint and my pelvic floor muscles!

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Drat my sacro-iliac joint and my pelvic floor muscles!

Postby Viola » 10 Jun 2015, 17:16

Hello everyone, nice to meet you. Well, it's horrible to have to, but I'm glad there's a support forum for this.

I'm 37, in Scotland, female, and have severe ME/CFS and also fibromyalgia and vulvodynia, amongst other things. I'm bedbound most of the day. I had a fissure perhaps six months ago, absolutely horrible thing. Thankfully it was short-lived, although I did not appreciated the blistering headaches I got for a week from the Rectogesic (which I tend to refer to as nitroglycerine, it's the one part of all of this that amuses me). I think it happened because of a trigger point cluster from hell which built up in my left thigh. I had an injury to my left sacro-iliac joint back in 2015, apparently I'm a smidge hypermobile, and it causes the odd bit of trouble on occasion. Right now the occasion is a big clump of trigger points in my left gluteal area, a secondary clump in my left shoulder, and they merrily radiate out all over the place, including down to my left foot and up to my nose. I've been on tramadol and diazepam every day for about two months now, which is unusual for me.

Now, unfortunately the fibro has made me stop tolerating massage, it just makes it make those two hotspots flare up and hurt horribly, even if the massage was to a completely different area. I had a lovely therapist who does myofascial release therapy, hot stones, trigger point therapy and so forth, and she was doing her best to work around this, but eventually we gave up as it kept making the pain worse overall. But the one time she completely nobbled it in one session, with no bad effects, was when I had the knots in my thigh and the fissure, plus a vulvodynia flare-up. I've just remembered this, as guess what, I have something going on in my thigh again as of Tuesday, and a few days before that, a nasty bout of constipation (dear tramadol and its side effects) kicked off a tear, there was bleeding for a few days, and today I realised that it's a fissure again, as it was still hurting in the evening after a morning BM. Possibly it was flared up this time by seeing a chiropractor/acupunturist the evening before, although her treatments seem to be good. Anyway, that's the working theory, and I might reread Heal Pelvic Pain and try to get back to doing the exercises and meditation and such more regularly. I'm seeing the massage therapist on Sunday and we'll see if we can at least calm down some of the party that trigger points must be holding in my thigh and pelvic region. All the muscle tension they must be causing can't be good for the fissure.

After taking diazepam earlier in the day, and tramadol 30 min before doing this, I fished out the Rectogesic, got my support worker to pick me up some disposable vinyl gloves, took it and the silicone lube (is that OK?) into the loo, managed to apply a small amount internally this time, and then lay with my head on an ice pack. That was about six hours ago, and I reapplied an hour and a half ago. Either the Rectogesic isn't really working much (it does say "throw out after eight weeks" on the tube), or the ice pack and preventative meds really worked, because the headache has been very minor. I should let my GP know what's going on at least, and should I get another tube of Rectogesic?

Next question: what else should I do? I read here somewhere that ice packs aren't a good idea while it's healing because inflammation is a necessary part of the process. Don't worry, I won't take anti-inflammatories, I can't tolerate them. I used linseed for a few days, but I'm not sure a bulking agent is what I want, and have switched to two sachets of Movicol as of yesterday. I'm vegan and eat a wholefoods diet: could people give me advice about what sorts of foods to eat and which ones to avoid? Is there anything else I should know? I'm a bit nervous about stretches, can they do any harm, should I do gentler versions of them? If I'm up to having the odd short walk, I will. I'm also trying to avoid spending too much time sitting.

I also spent the night before last going to the toilet an awful lot, and my urine was smelly, though that seems to have stopped. It's all fun and games in my pelvis right now.

The vulvodynia isn't flaring like it did before, but the nerve pain that's running through my leg can be felt in my vagina. Unfortunately not a single doctor has examined me for the general pain issues (the previous fissure was diagnosed by a very sweet young GP, who was as gentle as she could be), not even the Pain Clinic, who were absolutely bloody awful. I don't even know if it's worth asking them to start looking at what is going on with my back, or whether they will consider "sacro-iliac joint not moving freely and causing a huge amount of pain" to be a nonsense diagnosis from the chiropractor. This is the NHS, for reference.
Viola
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Re: Drat my sacro-iliac joint and my pelvic floor muscles!

Postby owmybum » 11 Jun 2015, 14:50

Hi and welcome!!

I'm sorry to read of all your painful conditions..... And a fissure on top of all of it!!

I believe ice packs are as good as heat. I use ice when I feel things are puffy down there. I would just use what feels the best for you.
I was going to suggest movicol...... But you are already on top of that one!
Remembering to drink plenty of fluids throughout the day to help the movicol to keep things soft is very important too.
It's so hard to advise on diet, as we all respond so differently to foods. I personally avoid things with lots of insoluable fibre such as bran flakes etc. I'm sure you have a very healthy diet already being vegan.
I hope some of this helps!

OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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owmybum
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Re: Drat my sacro-iliac joint and my pelvic floor muscles!

Postby Viola » 11 Jun 2015, 15:56

Thank you! I forgot to mention that I already aim to drink 3 litres a day, cardiologists orders, and have been managing over that lately. The GP has sent over new Rectogesic, as the old one was too old. The headache was livable, but I think it's making my vulvodynia flare up, which I gather has happened to other women here. Also my period's due soon, what timing!
Viola
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Re: Drat my sacro-iliac joint and my pelvic floor muscles!

Postby owmybum » 12 Jun 2015, 10:47

Yes... Periods always make things flare up. I get very sore before mine.
If you continue with bad reactions on the recto you could try asking for diltiazem.?

Well done for keeping the fluid up!

OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
User avatar
owmybum
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Posts: 2826
Topics: 42
Joined: 16 Sep 2012, 16:00
Location: UK
Has thanked: 205 times
Been thanked: 154 times
Gender: Female
Mood: UGH !


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