Bedbound and literal pain in the bum area

[Cap413]

Hello everyone

I've been bedbound for the past 5 months or so, only able to sit out of bed for an hour or so every day, but even then I'm sat in a chair.

Over the past couple of weeks, I've started getting pain in my bum and in that general area. It isn't pain exactly, just pressure and soreness and a general aching sensation. The general kind of feeling you would get if you'd been cycling for hours or perhaps had some kind of vigorous sex (for the ladies). In addition I've started to get stabbing pains in my legs and general weakness in my legs and knees when I do walk about. I was really worried when it first started happening as I was concerned it could be something more sinister, and I'm going to get a smear on Monday just to double check that area, but I've actually realised that once I stand up, the pain and discomfort goes away. So, this must be related to increased and prolonged pressure on my Coccyx due to the fact I've been bedbound for so long.

If this is due to sitting/laying in bed, it's probably only going to get worse. I think I'm quite lucky I've not gotten any bedsores as yet. I'm currently using a towel, rolled up and placed in a ring shape to take some pressure off my Coccyx and this does seem to be helping with the discomfort.

Does anyone else suffer with this? Does anyone have any suggestions of what I can do and if it does sound like Coccydynia?

Thanks!

 

[Neunistiva]

I get the same thing, usually around protruding bones, like sitting bones and hips. I think the pain and irritation may get worse when I use electrical blanket, probably because of the heat. I first developed it when I got arrhythmia and could only lie on my back.

Only relief I found is changing position as much as possible in bed, which is really difficult for me because I get out of breath even with slight movement, and also now that my arrhytmia is under control I try to sleep on my stomach as much as I can.

 

[NelliePledge]

Ive got mild (my normal) moderate (when Im at worst) symptoms so not the same as you but I do have to spend time in bed when I get PEM. I get sore muscles in lower back bum hips and thighs most of the time in bed and out especially after Ive been somewhere and had to walk, stand, I just assumed it goes along with muscle weakness due to them not being able to get enough energy. I dont have the coccyx thing. Im chubby so dont have protruding bones. I sleep on my side and use a couple of pillows to help my position - one between knees and another in front of me. I do get all sorts of different pains stabbing, dull, neuropathic sort of electric feeling also muscle twitches. Maybe worth talking to the nurse when you get the smear about positioning in bed, support, also there are pressure reducing mattresses you can get to prevent bedsores - that is something you really really need to avoid

all the best I hope you can get some help with this

 

[Snowdrop]

Hi @Cap413

Same here. I sleep on my side and every night is a struggle to fall asleep as I toss and turn. I'm So exhausted when I go to bed this often means getting up later and taking measures although sometimes I manage it before retiring.

I use a cream for muscle ache relief on my hips The particular one I use my sister gave to me. It's called Deep Blue Rub. But there are a number of options out there.

Next I take a pain reliever for me that's Aleve (Naproxen)

I keep a damp washcloth (folded in quarters) in a baggy in the freezer, I get this out sometimes and apply it to the are if needed.

I sometimes do the pillow between the legs thing too as mentioned above.

I've tried, during the day when I'm awake, to use a small ball to roll it around the area but find that awkward and the area too tender.

Hope you find some relief.

 

[NelliePledge]

meant to say do you use Epsom Salts in the bath that is good for helping aching muscles relax if you have the energy for a bath

 

[hellytheelephant]

Hi @Cap413- You have my sympathies. I have pain in all the areas you mention, also bad pudendal pain and sciatica. I often have a heat pad over my groin or behind lower back- but it depends on the type of pain. Over time my pain has become more widespread, but started initially with problems sitting. I would say go and see your Dr. It is easy to overlook any changes and see them all as part of ME- but it is always worth checking. I had to go yesterday to GP to double check that ME was not concealing other problems and she put my mind at rest.

I now always sit on some sort of special cushion ( upright as little as possible and usually in small doses not one hour straight). I always heat the area ( I have been known to have a hottie in the back of my pants!), as for me that helps. In bed ( I am in bed the majority of the time)- I put pillows over the mattress so I am completely supported and raise my legs with a 'wedge' pillow which takes the pressure off lower back. You can alternate this with lying on one side with a pillow sandwiched between your legs.
The other thing to look at would be your constipation regime....

 

[trishrhymes]

I just experimented with looking under 'bottom cushion' on Amazon. Lots to choose from, basically with a hole where your coccyx sits to reduce pressure on it. Hope this may help.

 

[Neunistiva]

@NelliePledge For me there is a distinct difference between the type of pain of generalized muscle aches and sorness that are directly caused by ME/CFS, and this localized pain which is caused by tissue damage from bedrest and which which all bedbound people, healthy or sick, struggle with.

 

[NelliePledge]

@NelliePledge For me there is a distinct difference between the type of pain of generalized muscle aches and sorness that are directly caused by ME/CFS, and this localized pain which is caused by tissue damage from bedrest and which which all bedbound people, healthy or sick, struggle with.

fine each to their own opinion

but what cap413 described was feeling like having been cycling for several hours in the bum area and also leg weakness and stabbing pains
which sounds like stuff that I get that from what Ive read and heard from others are ME symptoms

 

[Neunistiva]

@NelliePledge LOL, it's not an opinion I was just telling you what it's like for me

 

[Tella]

@NelliePledge LOL, it's not an opinion I was just telling you what it's like for me

Hey r u bounding now? How r u?

 

[Tella]

Hello everyone

I've been bedbound for the past 5 months or so, only able to sit out of bed for an hour or so every day, but even then I'm sat in a chair.

Over the past couple of weeks, I've started getting pain in my bum and in that general area. It isn't pain exactly, just pressure and soreness and a general aching sensation. The general kind of feeling you would get if you'd been cycling for hours or perhaps had some kind of vigorous sex (for the ladies). In addition I've started to get stabbing pains in my legs and general weakness in my legs and knees when I do walk about. I was really worried when it first started happening as I was concerned it could be something more sinister, and I'm going to get a smear on Monday just to double check that area, but I've actually realised that once I stand up, the pain and discomfort goes away. So, this must be related to increased and prolonged pressure on my Coccyx due to the fact I've been bedbound for so long.

If this is due to sitting/laying in bed, it's probably only going to get worse. I think I'm quite lucky I've not gotten any bedsores as yet. I'm currently using a towel, rolled up and placed in a ring shape to take some pressure off my Coccyx and this does seem to be helping with the discomfort.

Does anyone else suffer with this? Does anyone have any suggestions of what I can do and if it does sound like Coccydynia?

Thanks!

Hey are u bedbound now? How r u?