Hi everyone
Does anyone get severe stiffness after being in the same position for longer than 5 minutes which feels as if rigor mortis is setting in?
Rigor mortis : Hi everyone Does anyone get... - Behçet's UK
Rigor mortis
Written by
cherie1w74
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19 Replies
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Hi
I get terrible stiffness every time I sit down for 5minutes on a morning I have to throw my pillows in the floor and roll myself of the bed onto them just so I can hold the side of the bed to get up otherwise I wouldn't be able to get out of bed I have also fallen a few times when I have got up from sitting with stiffness it isn't easy and quiet painful it is caused by the inflammation associated with Bechets .
yes! i am constantly rolling my hips, neck, wrist, ankles and back. even laying down my neck gets very stiff. i have found that exercising consistently has lessened the issue for me. i did hot yoga for a few weeks and omg- the difference it made! basically if i don't move- i'm stiff. joints and muscle. i pretty much get constant neck and back rubs from my significant other- but funny thing is it doesn't take long to "loosen" up. i usually just need a few min rub down and then i'm good. i also have a thing where when i sit too long in certain chairs and the toilet (too long- who am i'm kidding- it'll be like 10-15 mins tops) both of my legs fall asleep all the way to the hips.
O I recently have been feeling like sleep makes all my pains worse. I'm only a year or two into my diagnosis so I am still finding "new" things that are popping up. Lately I have a huge swollen joint in my finger that has excruciating pain and stiffness with NO explanation thus far. I will be seeing the rheumatologist next week... My whole right side of my body hates me. From my foot to my neck including my finger.... I notice a correlation with lack of movement to overuse both being painful but a lack of movement more painful. I am starting yoga not this week but next and looking into craniosacral therapy also!
Hi everyone I know this was posted a month ago but I want to say I'm surprised and relived to have come across this particular qs.
Basically I've had behcets for 17 years now( diagnosed that is) so 2 years ago I gets diagnosed with fibromyalgia because of the debilitating pains I have in my legs upper and lower back hope and shoulders ( ok so practically everywhere).
I missed a few appointments at the centre of excellence and was discharged simply forgot tbh.
Now my GP wants to keep me propped up with painkillers for fibromyalgia which are F****g me up. Anyway I've told my GP I don't believe I have fibromyalgia and that it's the behcets because they tried diagnosing me with gout last time. I have asked to be referred back to the rheumatologist apparently I need uvietus again so I'm not sure what they will say. I'm 36 and I swear most days especially morning after sleeping I feel about 90!
When I originally complained with my symptoms before bd cams into the picture I was told mine was likely to be fibromyalgia or chronic fatigue syndrome as nothing showed up on tests. Percevere and keep going back to your gp until they take you seriously and refer you back to the specialist. Good luck
Hi cherie thank you I went back to my gp he's doing another referral to the centre of excellence. Hopefully I can try some different Meds with them I've just finished a weeks course of steriods and feel much better already. I also smoked some weed which really helped suppose I'm gonna have to tell them that too. But can't really become a pot head can I lol.
I'm glad you are getting somewhere. Definitely tell them about the weed as if will illustrate how desperate you are becoming to relieve the symptoms. Be really careful using this though too as your body will quickly develop a tolerance to it resulting In you requiring more and more or even stronger substances to get the same relief. It's a slippery slope. Please keep me posted on how you get on and if you manage to find a solution.
Thank you yes Ill keep you updated. So far I'm ok been out of pain now for about a week. I literally had 5 drags over a 2 day period because I couldnt tolerate the pain any longer and needed to sleep.
Hope your pains are not taking you over too much also. X
Do you get alot of joint pain or burning in your joints after exercise?
Could I suggest like one of the other members below that you try Tia chi, light swimming or gentle aqua aerobics and light rotational exercise like low impact Pilates first before the Yoga.
If you haven't already begun to strengthen and exercise your joints, or even after this , Yoga , can inflame your joints and head pain, especially if you already find your joints flare up with exercise.
I am not saying Yoga, and all its various types , isn't great all round body exercise, I used to love it, but although we have the impression that it is gentle, because of its slow movements and relaxation breathing, many poses and positions do put alot of pressure on joints , the back and the neck.
I have heard the same inflammation occur for friends and others with arthritis , MS and other immune issues too.
After the light strengthening from water exercises , short walks and things like Tia chi, then find a Yoga class , specific to helping those with joint or connective tissue issues.
And with any exercise, it's baby steps, don't try and do a full class straight away , especially if you are coming out of a flare, pick and choose your exercises, if something over extends a body part that flares with movement , don't do it or ask your instructor how to do it gently, with this habit you can also still attend a class and just join in 5-10 minutes when you are coming out of a flare and still get the mental benefits of seeing people and joining in a group.
The people in your class will all know what you need too if you just tell simplistically that you have a chronic illness and have to take it slow. That gets rid of that feeling some of us have that puts you off classes because we feel self conscious , or people look at you oddly because you need breaks.
Good luck with it all.
Remember that the exercise may not cure the stiffness but it does help to stop it getting worse and if you are in a flare or fatigued don't think that you should push yourself to do what you could before. Rather than helping it will floor you for days.
And in a flare, rotation exercises , enjoying time with family and little walks for circulation are often all you can achieve anyway.
Hi
I too have stiffness and pain related to inactivity for short periods of time. I leave work after my 12 hr shift in ICU tired but OK. After the 10 minutes drive home I can hardly move to get out of the car. Same in the morning if I have slept deeply and not moved much. I cannot get up easily and literally hobble around for 10 minutes til I loosen up. Heat is good and I find my infra red sauna especially valuable for pain and stiffness. Good luck finding your solution.
Thank you for all your replies. It's good to know im not alone on this. I literally end up looking like a barbie doll if I'm still for longer than 5 minutes and as I have a desk job this is pretty much constant. I too started pilates and yoga 2 weeks ago along with aqua aerobics so I'm hoping the gentle exercise and stretching will help. I'll try some of your other suggestions too. Thank you.
I too have rotten stiffness. If OK I'd love to know what medication you are all on. I'm only in colchicine morning and night, but having a bad flare and feel rotten. I love Pilates it helps lengthen and stretch my muscles. Good luck I hope you find relief soon.
Hi Michja. I was on colchine but started getting muscle wastage in my legs so was taken off it. I just have a depo medrol injection every 4 months now and I am waiting for my specialist to decide which alternative I will be trying next as there are a couple of options. I'll keep you informed.
Yes. I used to have a hard time walking after sitting for more than a few minutes. I would keep on my feet all day long because getting up after sitting was so hard. A few years ago when I was a home care nurse it was so bad that when I went to bed my husband would have to help me up because I couldn't stand up by myself. After a few minutes of walking around I was ok. At that time I thought it was because I was overweight and the floors in the home I was working in were all tile. I stopped working there and lost weight and still had issue whenever getting up. Now I have gotten it a bit under control. I still have issue, but not so bad I have to get help.
Thank you. I am currently trying to lose weight to see if thathere will help but have seen no difference yet.
I forgot to mention a few things I did to make it better. I did loose weight, but it was still there. (It still is now, but nowhere near like it was, I hardly notice it.) First I bought some Earth Kalso shoes. They are awesome. They have a negative heel and help with the leg pain tremendously. They are Made In China now, which is a disappointment, but I have been able to score several pairs online (eBay) at a substantial discount. The other thing was giving up corn syrup.(all corn syrup is gmo) I didn't realize it is in everything including breads, but you can find stuff without if you look. No soda pop. I used to love ginger ale, but it all has corn syrup in it and if I drink even hours before bed I wake up from the pain. The other thing is acv, a spoonful in a small glass of juice every night. Sorry this is so long, but those things really made a difference for me since I prefer not to take meds for anything.
How did you lose weight? I have lived most my life 125 lbs but after being hospitalized for about 3 months last year i have hit 200lbs since i have had all my health issues. Because of my body cramping when I am active for more then 10 minutes i get severe pain
I too put on loads of weight from inactivity but in the last 4 months have lost 25kg by following the 2 meal a day diet. Just another 25kg to go! I feel better for losing weight but it's making absolutely no difference to the stiffness and we do daily yoga in our lunch break at work and this makes no difference either!
Cherie
Hey there! So I have been waking up with this exact feeling like my body is in early rigor mortis stage and i am desperately trying to shake it away. First it started with my hands but last night it was mixed with a dash of charlie horse pain in my legs. I thought this was happening due to my kidney failure last year but I dont know. When I told my doctor he didnt seem to understand how dehbilitating it is. So yeah I have been and its steady getting worse
