Log in
Behçet's UK
4,207 members3,597 posts

Pain

Anyone else up at night with joint pain?? Soooo fed up with being in pain and keeping me up at night😡. My knees, elbows, shoulder, toes and fingers but not always all at same time. Anyone else get this? Starts off as ache then a deep pain, just can’t describe it but is excruciating 😢. Want to feel normal just for a day

28 Replies
oldestnewest

I am there with ya. The worst for me is my knees. They burn and hurt like hec. Wake me up burning and throbbing. Sometimes it’s my whole body that throbs in pain. Just like a hear beating - bom bom bom in pain from head to toe. But my hands. Oh God my hands. They throb with my body - and when they start I know that the rest of my body is going to follow. I can’t drive, sit still - lie down - do anything but pace when I’m throbbing all over. Hot baths, ice, stretching - nothing helps but opioids as much as I hate to admit that. Sorry you suffer from this. I may not feel your pain, but I can imagine some.

1 like
Reply

Thank you, nice am not alone but sorry for your pain. Today feel sore and achy in those joints..... not going to be a good day!

Reply

I have found some CBD lotion that is helping. You can buy it online because it doesn’t have THC. It has 800mg of CBD. I’d recommend trying that. It doesn’t take it all away but it slows it down.

Reply

Yes I do every night. Like you, all over but not always in every place. My hips and back are the worse, I actually feel paralysed at times and struggle to turn over, my hips constantly feel like they are collapsing, it is horrible, it affects my walking most of the time. 😢

2 likes
Reply

Wish had something encouraging to say other than, sorry you in pain x

1 like
Reply

I’m sorry you hurt like that too. Have you had your hips looked at by a doctor just to be nosey? Since it affects your walking I was wondering if it is a physical issue with your hips. Pain is so overwhelming.

Reply

Believe it or not, no one as ever looked into it, they just keep giving me pain relief which doesn’t work, except cause constipation! I am currently battling to get seen, my appointment is next February! I am really fed up with fighting for help. 😢

Reply

Keep fighting! I know it’s hard, but we have to advocate for ourselves. My sister knew there was something wrong with her and kept pushing her PA and her doctor forward and they found pancreatic cancer. Because they found it early she is alive five years later. Usually only 6 out of every 100 people with pancreatic cancer are alive five years after diagnosis. I wish I was as strong as her and I use her as my example.

I hope you are able to find some semblance of relief until your appointment.

Reply

I was up all night with the same issue. Wish I had some advice. No rhyme or reason on my end why this happens. :( SIgh. And now heading into a 10 hour work day and taking care of my little munchkin who just woke up. The pain is just beyond bareable.

Reply

I feel for you guys does anyone know of pain relief for left side down to the foot walking like a weird person for more than a year. Can’t see specialist until February next year and what my doctor gave me interacts with seizure medication!! HELP!!

Reply

Radiating leg pain quite possibly a lumbar spine issue. Slow back exercises & warm showers can help. I use a tens unit on my back muscles which helps too. IV Remicade infusions can do wonders for spine & joint pain relief.

Reply

Seems my mom used Remicade for her Crohn’s disease. Great for inflammation too. It used to be 10k a pop. Is it still expensive? I’ll ask my rheumatologist about it. I gave him the names of the last two drugs you told me about and he is checking into those too.

Reply

I’d advise to go the CBD route. The lotion I get online has 800mg of CBD in it and it helps. Send me a private message and I’ll give you the website. Anyone can do that.

1 like
Reply

Also take oral drops or pills - the pills I take have 100mg of CBD in them.

1 like
Reply

I think it's safe to say we all feel the same way, I've never felt pain like this mine is my knees, ankle and wrist and then it's like the whole body follows. The only way i can describe it and have been describing it for year's, i say ot feels like I've been hit by a track as the pain is so sever and i can't move. I really feel all your pain and then we have to get up and deal with our children and go to work. I've recently been put on tredemol and it's been helping a lot. Stay strong everyone. X

1 like
Reply

What type of drug is tremedol? I like to know what people use that work because I haven’t found one that works yet!

Reply

Ah - Tramadol - I know what that is - sorry!

Reply

Careful with Tramadol. Milder than Percocet or Vicodin but can lead you down a slippery slope. I ended up taking 180 vicodin a month for 5 years. It caused a depression that made it much harder to cope with this chronic illness. IV Remicade infusions can help alleviate spine & joint pain.

Reply

Hi Benne09

What you describe sounds like me only I also have Elhers Danlos (ED) too, in other words Joint hypermobility syndrome with a few more related issues.

I have had this pain much more on the night than I do during my day time it is as though I can cope being up and about and that's why I used to always be up walking around the house in the middle of the night to try and get some relief, it felt better somehow.

I was first diagnosed with ED and a year later BD and it has been a struggle to try and know which disorder causes the joint pain but I have figured that because I am much more aware of my joint placement now and try not to over compensating my joints which is something I continuously had been doing throughout my life but now that I have reached my 50's my body has started to scream even louder...

What I can say for sure now is the swelling I get around my joints is I truly believe caused through mainly my BD because I have gone through weeks of not doing anything to over use my joints and I now know the feelings are different, something I was not aware of before.

My ankle inflammation I know is swelling in the tendon sheaths mainly around the outer edge of the ankle bone and up the front outside edge of the shin but only part way up the leg. The elbows, knees, wrists and sometimes my fingers all get pain and my pelvis on my right side is literally a thorn in my side, apparently I have a twisted pelvis no idea why and nobody has ever said what I should be doing about it... apparently another rheumatologist told me I have bursitis on both my hips and this had not really bothered me until she had a good old poke around and not 12 months later the niggles from this are still with me, why do they do this...

Anyway here's what I have learnt to do before ever knowing I had a BD or ED and the pain and discomfort was the norm for my life and has been for decades.

Firstly I bought a long pillow that I place in front of me in bed from say below my neck down the length of me, I put my right arm over the top of the pillow when I sleep it stops me from putting my right arm across my body and dangling out of bed, this helps my back and my chest feeling as through I am folding myself in two, I also have costochondritis so the long pillow definately helps with this.

Secondly I have another standard size head pillow which is very soft and easy to squish together, I am not wishing for great depth just a flat soft pillow, I place the soft pillow length ways in between my knees and ankles so they do not touch one another.

Thirdly I place a thin soft quilt/duvet under my ankle that is touching the bed, I sleep on my left side, I cannot sleep on my right it causes too much pain I believe through the twisted pelvis.

I use lots of different things to try and help the inflammation around the joints, aloe vera gel helps sooth that burning feeling, soak my feet and also bathe in water mixed with magnesium salts, I have just started using CBD balm on my ankle joints as a test, I have used lots of inflammatory gels, comfrey cream, peppermint teabags on joints and soaked my feet in tea mixed with water. I am not able to take anti inflammatory drugs like diclofenac but occasionally I do have to take ibuprofen because I am just desperate and y brain think it helps :-/ I started Azathioprine this summer and I am still being monitored weekly but what I can say with Azathioprine is that my inflammation around my joints has reduced I get nowhere near as much burning and my muscle tightness in my biceps and calves in particular has reduced, I am not saying that it is yet a wonder drug for me but it has given me some of my life back even though I had a blip about 6 weeks or so ago with my bloods (WBC & Neutrophils) which ended up me being taken off Aza for five days with awful consequences for at least 3/4 weeks afterwards, then 2 weeks ago I got put back on the previous dose of 100mg with a view I could go up to 125mg once everyone is happy my bloods are behaving and if I wish to try this.

As well as helping with the inflammation which in turn is reducing some of my joint pain the Azathioprine is making me have more sleep, I am not sure it is making me have a better quality of sleep but I am sleeping longer.

Another tip I got told about for helping to get back to sleep was the one where you take a deep breath in through your mouth hold it for 20 seconds and breath the breath out slowly and repeat, the more you do then try to get the breath in deeper into your body and even hold it there longer, it is supposed to refresh your bodies oxygen and get rid of the build up of carbon dioxide. I rarely get out of bed for a walk about and if I do I now manage to get back to sleep using this method.

I also do gentle stretches which were given to me by the chiropractor who used to do gentle soft tissue massage, she too had ED. When I do not do any stretching, although I am not allowed to do huge stretches due to the ED, I begin to feel as though my body is curling up on itself like shrinking and making my body seem shorter and more rounded.

I saw a physio last year and I asked her to tell me honestly if I needed to do anything else other than the exercises she had given me, my proprioception apparently was terrible and why I was there, anyway she proceeded to tell me I needed to bring my body out of my waist, apparently I sat and stood with my ribs sinking into my pelvis / waist, she told me to stand/sit up and bring my chest out, bring my bottom in and stand/sit tall out of my waist, I was amazed at how this felt and I felt so much taller, I went home and looked in the mirror at my stance and how she had shown me to stand/sit and walk, it makes such a difference, try it :-) I am still trying to work on building up my strength it is such an important factor with both my conditions but sometimes the pain gets the better of me and I stop and dread restarting again, my new rheumatologist and the old one both say you have to try and work through the pain as the benefits outweigh not having muscles and strength in our bodies.

I try and do as much of everything gently its the only way I can get though the days and nights.

The only downside I have found with Azathioprine is I now appear to not be able to have more than 2 glasses of wine, I know I am not supposed to drink much alcohol with this drug and I don't I just used to enjoy some wine on a Friday and Saturday night it helped me relax, but I have learnt if I have that 3rd glass I have a very awful reaction in my body which is quite unlike anything I have suffered with before and it lasts all the following day too... everything in moderation I suppose :-)

Hope I have not bored you to tears and some of what I have written might be helpful to someone trying to deal with joint pain and inflammation.

Gillian :-)

3 likes
Reply

Gillian - this is sooo helpful! You have been so self aware it is truly amazing. Thank you for sharing this with us!

1 like
Reply

Hi ldramjet

I think because it took nearly 40 years to get any diagnosis I have just had to try and fight to look after myself, writing down about every little bit of me that hurts helps, I've tried so many things because nobody believed me about what was going on in my body, my ulcers, my pain, it was simply termed stress and I was doing too much, nobody gave me medications simply casting me aside with little or no belief I was left to try and simply find my own way in life until everything went too far in 2015 and the doubters had to start believing something else was wrong and yet it still took my own research to finally stumble upon BD and another fight to get to at last sit in front of the right consultant, to at last speak to someone who could potentially help, it was a huge huge relief, I had got a name for my condition 'BD' I had been hoping all my life to find a cure but sadly I got given a condition which I am still hoping I will start to feel much better with time and the right medication and then I too can write like one of our fellow BD sufferers wrote in a recent post about feeling 'Normal' now that would be great :-)

I believe what I have is mild in comparison to some of our fellow sufferers, I see and read about people who have many much much worse conditions than me, so I thank my lucky stars everyday that I can see, hear, love and laugh, I am able to walk and speak to people and now I have a group of people to share my woes which is just great :-)

Try placing a piece of paper and pen on the side in a place that reminds you every day to look at what you and your body is going through and just jot it down day by day week by week and every so often read what you have written down and try to find something that might make your life easier.

Knowing what hurts and what I am feeling in every part of my body helps me to now speak about what is going on in my body rather than generalising, it is too easy to take a broad brush and make a huge sweeping statement saying I don't feel well when sat in front of consultants and with a condition that's very much inside of us it is very helpful to be aware in as much detail as possible.

Be happy

Gillian :-)

Reply

I found this app called ‘Day One’. It is a journaling program. Since my phone is with my 24/7, I figured why not have an electronic journal with me 24/7. Your telling me to write things down finally got through to me, so I have been writing about my body every day. The program also syncs with my laptop if I need to type using a keyboard. My hands hurt when I actually write so journaling with this app fixes that issue! And I can have more than one journal. One for BD, one for my Fibro, etc., but I keep it all as one so far.

Thank you for sharing. You have helped really helped me a lot with your writings. You have also triggered some memories of my own where doctors treated me horribly and told me I was a malingerer and other things. I’m looking for a new primary care doctor now because she gives me those same kind of vibes and I don’t take that anymore. I have a great team around me except for my primary care doctor which sucks.

Onward and upward!

2 likes
Reply

Brilliant wish you luck in finding the right person to help you :-) x

Reply

No the best treatment for mouth ulcers!!

Reply

No sick of being in pain all of the time and our doctors and specialist becoming complacent!!💐

Reply

Always in pain at night. Just been having fights with Mum about taking painkillers. Hope u find something soon!!

Reply

Same! Hate nights seam so much worse!!

Reply

I woke up last night - felt like needles all over my mouth. It’s starting to break me some days.

Reply

You may also like...