Sleeping is a nightmare

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Sleeping is a nightmare

Postby ihatethisclub » 05 Jun 2015, 14:53

I can't sleep more than two hours at a time. I'll wake up being seized by a spasm. I'm way overusing the nitroglycerin but I don't know what else to do. Sitz baths actually make me feel worse, so I feel like I have few options. I've only gotten worse since seeing the CRS. She has no sense of urgency about helping me get over this. When I see her again, I'll have done 8 weeks of nitro, then she wants to do Botox and said that almost always takes two rounds--so, potentially six more months of this.
I made an appointment with another CRS in another state (my options are extremely limited where I live), but he can't see me for 2.5 weeks. I'm at the end of my rope. I've spent hundreds on creams.
I bought sleeping pills this morning because I can't survive on 3 hours a night, however, I'm worried that I'll still be in agony but too exhausted to do anything about it, and also, I have young children and I can't just sleep late into the morning. Thoughts?
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Re: Sleeping is a nightmare

Postby msimon » 05 Jun 2015, 17:22

Have you tried ice? Ice can break spasms as well as heat. It's not great for blood flow but if you have inflammation that could be contributing to your pain. Inflammation can also cause spasm. You may also want to try one of the other ointments. Some people don't respond to one but then do respond to another one (ie., nifedipine, diltiazem).

Why do you think the sitz baths make you feel worse? I always use a full bath as the sitz bath idea seems like it would put more pressure in the area. Also, if the water is too warm it may be making you more inflamed? How hot is the water and how long do you stay in it? Have you tried ibuprofen for the pain? What about muscle relaxants? My pelvic floor muscles are affected too and the fissure ointments do not work on those.

As for the botox, it may take a while to actually heal but pain relief at least would come much before 6 months, usually 2 weeks.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Sleeping is a nightmare

Postby hurtinend » 05 Jun 2015, 18:50

Agree with msimon, ice packs help me quite a bit, only 20 minutes at a time though, and wrap ice pack in a towel, do not put directly on skin. Also, alternating warm and cold is helpful, I do that a lot too, heat pack, followed by cold pack...experiment safely with this its not a cure but it does help, give it a try I'm sorry for your pain.
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Re: Sleeping is a nightmare

Postby ihatethisclub » 08 Jun 2015, 15:37

Thank you both. I've realized I've been having an allergic reaction to the nitro cream. I stopped all ointments and I've been icing and using warm Sitz baths (thanks for your recommendations!). I am still taking ibuprofen and I started taking Benadryl at night, both to sleep and to bring down itching and inflammation. I'm so much better today. Oh, I have been using olive oil on the area after my shower. It seems ok--coconut oil was not.

I'm starting to feel hopeful that I can beat this without surgery, either LIS or the kenalog/feingold procedure. I'm weighing the option of getting botox. I see my CRS on Wednesday to discuss it.
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Re: Sleeping is a nightmare

Postby msimon » 08 Jun 2015, 19:31

You are very welcome :) Glad to hear you are ding better. Keep us posted on how things for you.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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