Muscle pulling off bone????thats how it feels;(( - LUPUS UK

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Muscle pulling off bone????thats how it feels;((

brave profile image
19 Replies

Ok......hows things going with you all?Can i ask if anyone out there suffers this evil pain of feeling as if the muscles and ligements are pulling away from the spine?i have tender points and any connecting muscles feels as if they rip away from bone on movement,it scares me :((

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brave profile image
brave
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19 Replies
Riverbird profile image
Riverbird

Hi brave,

Not the spine with me but certainly back of knees and other joints when trying to move sometimes. It feels like they are being stretched to the very limit and can be very painful.

Fortunately mine comes and goes but one of the many symptoms I believe. Hope yours eases very soon. Take care.

tracynoe profile image
tracynoe

Hi brave

I had a similar sensation in my arm, at the time my shoulder was agony and I was having trouble moving it at all it was weak felt very odd and I had no control over it. I saw my GP and he said it was frozen shoulder and he referred me to the surgeries Phsio. She examined me and asked about when it started I could only described the pain as feeling as if something was being ripped of the top section of my arm. After her full examination she said my description of the pain and sensation was accurate as I had torn my rotator cuff from the bone!! Very painful she assured me that she could help build up my other muscles and tendons to take over and she has helped I still get pain and have restricted movement but that to me is better than the risk of an operation, she also did acupuncture which helped with the pain. So the pain you feel might not be too far from the truth.

Tracy

ebril profile image
ebril

I get that in my arm its not very nice feeling and trying to explain it to my rheumy was difficult I thought it was just me I've now been put on steroids because of this something I was trying to avoid but will see how it goes x

LucyLocket profile image
LucyLocket

I'm off to see the doctor this morning with burning pain which radiates out from my right breast into the armpit area, around the shoulder blade and down my arm which is also rather numb and my hand tingly. I've had this for several weeks now and it isn't responding to ibuprofen at all. I spoke to the duty doc on the phone just now and he doesn't know what it could be from the symptoms so I'm not sure what information I will get when I see him.

It seems as though we have all these painful symptoms which the doctors aren't really able to help with. Assuming the pain is not due to some other underlying factor, has anyone tried going to an osteopath or chiropractor at all? I never have and I was wondering if they might be able to help with some of this stuff that we go through. The conventional doctors don't seem to be a huge amount of help do they. I don't see the rheumatologist often enough for them to be able to give any help with this ongoing stuff either. Have you talked to your doctor about your pain Brave? Were they able to give you any idea about what might be going on?

Sher78 profile image
Sher78

Sounds like Mixed Connective Tissue brave, I suffer with this really badly (can affect ANYWHERE on the body that has muscles, tendons or ligaments). I find I suffer more with this than anything else most of the time :-(

brave profile image
brave in reply toSher78

Me to sher ,its by far the most annoying symptom and as its my back spins shoulders and chest it kinda restricts everything i do ;( what treatment works for you please?

Sher78 profile image
Sher78 in reply tobrave

Sometimes massage helps 2 ease it slightly but other than that, I haven't had much luck in finding anything else :-( It's awful when it goes in u're back as it affects u're chest & breathing too :-(

I just tend 2 dose myself up on pain meds 2 dull it a little. If u find anything that helps, please share :-)

sollyn profile image
sollyn in reply tobrave

Hi brave, that was the most crippling pains for me also. I have found that very gentle exercises, and spa baths have been the most helpful. Along with steroids and methotrexate. However I know someone who swears by cabbage leaves. Try to avoid any running or jolting and definitely not clapping. I found that caused it to flare up big time.

I really hope you get some relief soon.

brave profile image
brave in reply tosollyn

Hi i gave up running and impactive sport a year ago ,not because i wanted but because i ended up very unwell,now a walk is maximum on a good day .

brave profile image
brave in reply toSher78

spine not spins sorry lol

i agree with sher i have muscle tendon pain a lot, mainly for me in upper back, shoulders,knees and thighs. it is very hard to carry on sometimes when its really painful but as my bloods are always coming back with no inflamation its hard to know what to do.

for me i wear good supporting bands around my kness to help me walk more comfortably and rest a lot when pain is bad.

i went to my doc recently to talk to him about it and he could only offer me strong pain killers he said physio wont help,i did mention fibro to him but he dismissed it straight away.

but he does give me a repeat blood form to do to keep an eye on it.

i also agree with sher that i too suffer with this more than anything else most of the time, but it does come and go.well more like a simmer sometimes its boiling and sometimes it just a simmer but never goes compleatly.

if its really scarey you then go back to your GP and have a good chat about it my GP knows i suffer with anxiety with lupus and takes my complaints seriously and this does offer some reassurance....that alone can help with coping sometimes.

take care

brave profile image
brave in reply to

Thankyou i agree ,its distressing ,and as we just got a puppy my rest is limited ,so im really struggling,it hurts so much and very distressing ;(

sollyn profile image
sollyn

Blimey, I don't think I could cope with a puppy. I have a very old cat and we don't know what to do when she is not around anymore. Considering an middle aged rescue cat.

brave profile image
brave in reply tosollyn

Having a puppy has sent me into a huge flare ,its torn our family apart not brought love and laughter ,we should never have took on such a responsibility ,and old dog would have been better ,now were faced with the emotional change of trying to re-home him,its sad

sollyn profile image
sollyn

I feel so sorry for you to have to make that decision. Before you rush into that have you thought of crate training him? That will allow you to have rest time knowing that he is safe and not wrecking and chewing everything in sight. Think of it as a play pen for puppies! I have seen many a happy pup in a cage, and even happier owners who can cope with the puppy then.

What type of dog is it? It may be worth persevering to get a pal at the end of it. you could train it to help you with the right advice.

Do you have any children? or is it just you that is responsible for it?

I really hope you get some relief from the lupus soon.

brave profile image
brave in reply tosollyn

he was in a crate ,i have daughter ,they were great with him ,however i just couldnt cope with caring for him and being a mum also ,so my health has had to come first as i spent three days in a bedridden flare so my dear hubby had to take time off work and hold the fort ,whos to say i wont keep flaring because of the exhaustion ?i had a rheumy appointment yesterday and i always feel relief when ive seen him as im very paranoid that others think this is a fake illness??and he makes me feel like its ok to feel like this ,gonna try the amytriptaline and introduce some gabapentine to help nerve pain ,we had to find the puppy a new home ,its so sad ,guilt is eating me ,we could have totaly avoided this if i had had the courage to speak up in the first place ,well my lupus is going crazy and i know its because all the stress has exacerbated it ,i hope it settles soon?thankyou for showing compassion ,i hope you are well?brave;)

sollyn profile image
sollyn

Hi Brave. I think you made the right decision for what it is worth, but from the point of standing up to be counted, it is so difficult when you are in a state of exhaustion and just to cook the tea is traumatic! I have found that the better I managed my sleep the better my brain functions. however it took a long time. I am now 10 years down the road and have only now stopped feeling guilty that I am not the same energetic person as I was, but what I think and feel and want are still valid.

It is so hard to let go of the past and look for the positives to go forward with. It sounds like you have some support at home though.

I hope the meds help. Ametryptiline is a great drug for helping with all of it and brilliant for aiding restful sleep.

Take care

Sollyn

brave profile image
brave in reply tosollyn

Thanks for kind words ,means a lot;)Weirdly 16yrs of suffering but only 12 months of def diagnoses ,and a 12 month worsening and lots of flares ,like literally eve couple a weeks ,with week to recover ,its so exhausting ,then finally i felt as if i was just starting to accept ,we get a puppy and after ten days im now in the most horrid flare and added emotional turmoil on top of removing him from our loving home ,so frustrating as were such capable people but this was just to much to deal with ,i really hate lupus ,feel like its got complete control and want it to start being a bit kinder ,maybe i need to be kinder to lupus too?regards amyltriptaline ,consultant said same as you ,why not try a drug that can help many symptoms than taking twenty pills for twenty symptoms and always reasurring when a drug has been around for a long time i guess?may i ask how youve learnt to accept and a little disease and medication history please?

sixxgunzz profile image
sixxgunzz

Hi as I get older I'm 49 now...I get this ripping feeling if I move where it resides for like about 3 months or more the disappear! Then in about after about 2 months from when it disappeared it will reappear somewhere else for instance it will be in one of my fingertips but if I move my finger and/ or hand the wrong way something every day such as reaching my jean pocket it literally feels like somebody is ripping my finger off my hand and it hurts so bad. Right now it is running down the side of my right hand pinky and I cannot take any bus hand I can't even use that part of my hand because if I stretch it the wrong way in any simple everyday gesture it will feel like somebody again is ripping my fingers off my hand now I'm starting to feel it in certain places in my legs, toes, feet I'm not sure if its my nerves are my muscles I wish I could get some help. And the only way I find out where it resides next is by the hard way Just reaching out to say hi to somebody. One more thing if I touch the area were its like pinpointed if I barely touch it it's excruciating pain on the inside like a shockwave of ripping and tearing.....

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