Anonymous 27/03/17
Last reply 10 months ago
Back and hip pain at night

Is back and hip/pelvis pain an MS symptom?

I have excruciating pain at night which gets worse the longer I’m in bed. Have had it a year and it is just getting steadily worse. I’m not getting enough sleep. Painkillers don’t touch it and I am very stiff in the morning.

My Physio says it isn’t my hip, blood tests from the GP don’t show inflammation so I think that rules out arthritis.

Any ideas anyone?

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jofamof5
11 months ago

I have the same exact symptoms. I have slept with my legs propped on pillows and pillow between my legs at night if I slept on my side. I use lavender night time baby lotion ( I love the smell) at night to help relax. I am not getting enough sleep at all either but these ideas seem to help me.


lilbird
11 months ago

Hello @teal

This is probably a stupid question but thought I’d ask it anyway just in case, is your mattress in good condition &/or the right degree of support that you need? Feel free to ignore me if this is something you’ve checked out already! 😊


Anonymous
11 months ago

@jofamof5 Yes, that’s what I do (the pillows) but it doesn’t seem to help at all now. The pain in my ‘hip’ is so bad.


Anonymous
11 months ago

@lilbird Not stupid at all!

We had a memory foam mattress, but I thought that trying to turn on it was a problem, so we got rid of that. We went to a mattress shop and took ages (at least three visits) working out a replacement and got a really good quality and expensive mattress but it didn’t help , too soft we thought, so we got rid of that after a year and got a firmer mattress and changed the bed frame itself, just in case. However, the pain is still getting worse, so maybe it is too firm.

Unfortunately, if I put a soft mattress topper on it, it makes my lesion in my neck/MS symptoms flare badly (or that is what I think is happening: p&n in all four limbs, reduced sensation, nausea, headaches and dizziness that last for days) so we got rid of that.

At the moment I have a duvet doubled over and underneath that 1″ of memory foam bought cheaply off the internet on top of the mattress but pulled down so only the very bottom of my pillow is on it. It doesn’t solve the problem but at least I can bear to lie on it for a few hours. I absolutely can’t afford to buy yet another mattress or expensive topper, although if someone could guarantee that they had the solution, I would, but experience seems to suggest that it isn’t the mattress.

I must have royal blood in me! (The Princess and the Pea)

I think the thing I hate most about MS is that I will never experience the sensation of being comfortable again. I miss that.


lilbird
11 months ago

See I thought it might be too obvious for you not to have considered it @teal but clearly I had no idea how thoroughly you had investigated It! 😉 I’m really sorry that I don’t anything more helpful to suggest! It was a large legion in my neck that brought on my most recent relapse (2015) & ultimately led to my diagnosis so I know where you’re coming from. Comfort is such a simple things to ask for isn’t It!


stumbler
11 months ago

@teal , have you ever considered that the pins and needles have been ever present, but are being masked by the present back and hip pain?

On that basis, it may be that a softer mattress is the answer for the back and hip pain, but you need some meds to address the pins and needles.

Just trying to think outside the box………….


Anonymous
11 months ago

Hi @stumbler – good thought, but no. Once triggered, the p&n are present at night and during the day, whether the hip/back pain is there or not. If I sleep on the hard mattress on its own it doesn’t trigger p&n but it has got to the point where I just can’t sleep like that any longer either. I’ve upped my lyrica, but I’m not that bothered about the p&n, pretty used to it, it’s the nausea etc that stops me doing things during the day.

I’m just wondering why I have so much pain that seems to be positional. Do other people get that? Is it that my ligaments/tendons are really painful, or just messages getting confused? Or are my ‘pain centres’ over sensitive? Or is there some other connective tissue/auto-immune disorder that presents like this? My father has ankylosing spondilitis, but although this feels that bad, my stiffness wears off within 30 mins of starting to move around and surely something would have shown up in the blood tests.

My recent dx of orofacial granulomatosis and severe dry eyes does make me think there is something else as well, but I have run out of things to ask people to check and the one thing about MS is that I have MRIs to show there is nothing skeletal of significance.

Maybe Tec (which I finally get to start on Weds this week) will miraculously bring everything under control, or at least the sickness and flushing will distract me.


Anonymous
11 months ago

@lilbird, yes indeed!


potter
11 months ago

I have hip and knee pain and I sleep on a extra firm water bed, it is like sleeping on a big cloud. But I have known people with hip pain that hate it. If you could find someone that still has a waterbed and sleep on it for a night, that could help you decide. The store we bought our waterbed from had put some in a Holiday Inn. If you were serious about buying one they paid for the room that night. Our only problem now is that we rarely get a good night sleep while we are on vacation. The most comfortable bed we have found in a hotel is the Marriott. Their beds are so popular they now have a on-line bed store. Potter


isaacson72
11 months ago

I have horrible back pain and my right hip down to my knee is always sore too. I think part of it (the hip to knee muscle tightness) is my horrible couch, where I sit and do needlepoint. I need to move to a different chair but I’m comfortable there – until I get up to move around.

As for my back, I’ve got facet joint arthritis. I have seen countless doctors. Finally my neuro sent me to a physiatrist. He is the one who told me my pain was the facet joint arthritis (as opposed to a herniated disc, degenerative disc disease, and other things I’ve heard over the years — all things I have, but none that were causing the pain). My neuro actually thinks it could be both the arthritis and misfiring nerves from the MS from my spinal cord lesion but says really there is no way to tell. But you mentioned positional pain — yes. I can’t twist so sitting on the couch with my legs up underneath me and leaning to the side on the arm of the couch — big no-no. Hurts like hell. Laying on my back in bed – another no-no. Repeated bending – no. I have learned to just deal with it. It sucks, though. Back pain is the worst. I hope you can find a way to make it better or at least tolerate it (and I hope that doesn’t come from nausea from your tecfidera!!).

Michelle


Anonymous
11 months ago

@potter that is really interesting. One of the suggestions from the store was a water bed, but I didn’t like how it felt. I only lay on it for a very short while though, so maybe I should go back and give it another go. It is the Hypnos Marriot mattress that we have now.


Anonymous
11 months ago

@isaacson72 thank you, it is so frustrating isn’t it. My physio is using neuromyofascial release on me (I think that is what it is called) and has worked wonders releasing my lower back and my rib cage so my spine should be more mobile and not as painful at night, but maybe it will just take more time.


potter
11 months ago

If you try testing a waterbed again make sure it has the firmest insides (bladder) it make a difference, our also has a pillow top on it and a extra cushioning mattress pad. Potter


pipster
10 months ago

What painkillers have you tried?

I get really painful legs/hips and sometimes back pain. If it’s on my left, I’ll roll on to my right and the pain will then start on my right! It usually starts in the early hours and is down to MS. I have read about a lot of people having the same problem.

I tried paracetamol and ibuprofen which didn’t do anything. Saw my doc and he said they won’t touch it as its neurological. He prescribed amitriptyline and it worked a treat.

http://chooselifechooselemtrada.blogspot.co.uk


steverb1
10 months ago

I got pain just like this long before I got MS (Primary Progressive) but it has come back recently so I don’t know if it is related or coincidence. Originally the doctor told me it was arthritic pain. A chiropractic got me out of pain saying it was caused by the surfaces of the joint socket rubbing together and giving me some exercises designed to open up the joint socket – and advised the pillow between the knees.

As stated, the pain has come back since diagnosed – it may be related or simply aggravated by the fact that I am not walking well. I am retrying the exercises to see if it helps.

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