Another can't sleep puzzle!

[Amber1414]

I would really appreciate a direction to go! For over a year, maybe 2 now I have had a problem almost every night, at exactly the same time.

No matter how tired I am or how comfortable I am when I go to bed I know that soon my tailbone area will start to throb, my bladder will start to feel like I have to use the bathroom, every 15 minutes for the next 3 hours! The throbbing pain from the tailbone starts to go down both thighs and into the calves. I kick and lash around in bed. My poor dogs have no idea of what I am doing. My grandkids who spend the night have to dodge me!

I have tried pain salve on my tailbone area, heating pad, ice packs, stretching, massage, slugging my muscles! Gabapentin, oxycodone. Nothing works. Does anyone think this has anything to do with PMR? I was blaming it on my sciatica but it is the exact same time every night. I have nights and am saddened about not wanting the grandkids to spend the night

[123-go]

Hi. Lack of sleep is debilitating full stop but when it's accompanied by pain that's a different matter.

I may be wrong but I doubt this is connected to PMR.

Have you damaged your tailbone by taking a fall or a knock? Have you seen a doctor? If not you really should seek medical advice: an x-ray or MRI should show the problem.

Here is a link with tips for sleeping with tailbone pain:

everlastingcomfort.net/blog...

I hope your problem is soon solved.

[Amber1414 in reply to 123-go]

I had a fusion of the L4,5 S1 joints in 2009 and was left worst off that I was before the surgery. I had herniated the discs back in the 80's when I was only about 30. They wouldn't do anything because I was too young.

I finally had surgery which I have since lived to regret. I haven't done anything to the tailbone. It doesn't happen every night, that is what is so puzzling. I just never know. My GP, pain clinic and arthritis doctor all just scratch their heads.

The CT scan didn't show anything didn't show anything .

[123-go in reply to Amber1414]

This must be so traumatic. One of my sons had a major operation on his damaged spine 20+ years ago and symptoms have surfaced recently. The waiting list for NHS specialist advice is 4 years (Northern Ireland).I agree with PMRPro about the buck passing.

I've found some info on the internet that you may or may not have seen yourself. I would imagine there is great cost involved but take a look:-

coccyx.org/treatmen/doctors...

[Seacat30]

I have had a version of this problem. Tailbone pain when flat on back at start of night but only feeling of need to wee at 2 hour intervals. Reducing during night.

It got worse at one point to include flank pain if I lay on my sides. I was then tortured for the first 2 hours every night.

Not the same as my back pain in bed with untreated PMR. Seemed to start after about 3 months on pred.

It has slowly gone off. I am not sure whether this is due to reducing level of PMR, reducing dose of steroids, physio, generally taking more exercise in the daytime?

[PMRpro Ambassador]

Have you reported this to your doctor?

[Amber1414 in reply to PMRpro]

yeah, they just say to ask another professional

[PMRpro Ambassador in reply to Amber1414]

Just telling myself to shut up ...

[Amber1414 in reply to PMRpro]

I meant as in ask one of my other doctors because it wasn't in their realm

[PMRpro Ambassador in reply to Amber1414]

Oh yes - I knew what they/you meant. But it is passing the buck and not good enough

[123-go in reply to Amber1414]

What a useless response!

[Suffererc in reply to Amber1414]

and …. They can’t just ask a colleague for you. What a sad situation

[Suffererc in reply to Amber1414]

Surely that’s a referral that they should do 🤓

[HeronNS]

Because this seems to happen when you are lying down, and also because you have a history of back problems, I wonder if the problem is caused by the position you are in because some nerve or other is being impinged? I raise this as a possibility because for about a year now I have, off and on, had my sleep disrupted by pain in my arm, which my physiotherapist and I have decided must be caused by a nerve in my neck somehow being affected when I am in certain positions. I have quite serious arthritis in my neck. Certainly physiotherapy, exercises and also a "perfect" arrangement of pillows at night make a very positive difference. I notice when the pillows aren't quite right. I also notice if I've done something during the day which strains my neck, or if I have failed to do my exercises. Don't you just love getting older?

[Nextoneplease]

Hi Amber1414 😊

I do feel for you, this sounds utterly awful. I can’t comment on the tailbone issue at all, but I wonder whether you also have an element of restless legs/ cramp going on? Especially if you’re often going to the loo, or maybe not hydrating enough. I’m sure this is not your main problem, but just an idea….I take a magnesium supplement every night and drink a lot of water ( up to a litre) during the evening, and I have found it really helps relax my muscles. Just suggesting it in case it helps….x

Meanwhile also hoping you find an answer for the main problem. Hugs xx

[Amber1414 in reply to Nextoneplease]

Thank you! I often wondered if I should cut back on water or add more. I do drink at least 1-2 liters during the day. I do have restless leg but wondered about it radiating from the lower spine. Is there a specialist to go to for this, other than a neuro or rheumatologist?

[Nextoneplease in reply to Amber1414]

I’m sorry, Amber, I don’t know what the relevant specialism would be (although I’d imagine it might be a neurologist).

I only suggested a magnesium supplement because honestly they’ve changed my life. I used to be awake literally half the night thrashing around with restless leg and cramp - magnesium is the only thing I’ve found that helps so far. My GP was not interested, didn’t seem to get how debilitating it was.

Hope you get help for the pain xx

[MiloCollie]

Have you thought about it being inside you? I had an anal fissure once which was very painful. Does it sting or hurt when you poo? After a poo it then throbs for ages. I’d see a medic for sure. It sounds painful xx

[Amber1414 in reply to MiloCollie]

I am actually constipated and have been for 12 yrs thanks to opiates! I am now taking a supplement called Mag 07 for it. My bigger problem is the bladder. I can sit on the toilet forever, feeling like I have to pee forever but not being able to go, no matter how much I think I need to go.

[MiloCollie]

Another short term relief. A TENS machine on your lower back? Good luck. No sleep makes me suicidal 🤬

[Amber1414 in reply to MiloCollie]

I have an internal spinal cord stimulator which seems to help block the pain to the brain but doesn't allow me to sleep because the vibration is set so high.

[Broseley]

Have you tried a different bed? Just an idea because I was suffering terrible sciatica type pain in my knees, ankles and back. I eventually found a new, solid bed base and a mattress topper did help enormously. It took a while, but these days you can try out new mattresses and return them if they're not suitable. It took about 6 months to find the right solution for me.

[Amber1414 in reply to Broseley]

I was on vacation a few days ago and actually, it wasn't nearly as bad!

[Amkoffee]

It sounds exactly like sciatica to me something I have recently become very knowledgeable about. It may be happening at the same time every night because of the position you're sleeping in is aggravating it. If you're not already you should be sleeping with a pillow under your knees. The other concern I have is that you might have a UTI. For reasons that are beyond my understanding... as we age the symptoms of UTIs can change. I know they have for me and my doctor has mentioned that she has seen this a lot. A simple test would certainly at least rule this possibility out.

[PMRpro Ambassador in reply to Amkoffee]

The dip tests are less accurate as we age - it does need culture to be done - and often for more than 3 days.

[Artnmusiclover]

Truly awful!! Similar for me last night...regarding the legs I find the 'Better you' Magnesium sleep spray very helpful when rubbed in...best wishes