Knee Pain and breathing problems with AS

Posted , 5 users are following.

Hi everyone, I got diagnosed about 3 years ago with AS after countless doctors appointments, blood tests, x rays and an MRI. I have just about managed to cope with the hip pain over the past couple years but for the past 3 months I have developed intense upper back pain. During the day I am stiff but at night it has been really bothering me, waking me up after 4 - 5 hours every night with a sharp stabbing pain between by shoulder blades. After I get up and wander around for an hour or so the pain subsides but during that time it feels as though my chest is being restricted and I find I can only take shallow breaths. I am a 24 year old female and I am fairly active - walk 2 - 3 miles every day, but this past week I have also noticed my knees get slightly swollen and painful when I rest. I have been to see a rheumatologist and she has put me on the physio waiting list (should hopefully be seen by Christmas..) but in the past I have found physio only makes my hip symptoms worse. This is really starting to get me down and lack of sleep is driving me crazy. Does anyone have any advice or suffered similar symptoms? I feel all alone coping with this at the moment and could really do with some friendly advice. Thanks.

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  • Posted

    Hi Keely...you are not alone with these symptoms..Are you on any medication for your condition ?  I also have AS..for three years now...well much longer if you take into consideration how long it's taken all the doctors to decide. I am worse at night with pain in the hips and down the legs, heels, shoulders and rib cage area...also neck problems too which affect my arms and hands.  Mornings are better but I can only stand for a few minutes and then get pain in legs and back. Can't sit in the same position and have to change how I am sitting until I get sort of comfortable.  The pain doesn't go away completely, it just is bad days and goodish days. Get your doctor to check your heart also....mine is 50% larger than it should be...as AS affects all organs. Also skin problems with unusual rashes, sweating so much especially at night. Waiting for a phsio app for so long..maybe you could ask them to bring it forward. I do hope you feel better soon...let us know how you are and what helps...Hugs to you.

     

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  • Posted

    I'm with AS and fibro and the HP joint thing and in past 3 months has also been affecting my shoulders, sternum and upper chest area.

    I have acupuncture when I need it for the shoulder area, doing the physio stretches at hydro with the physiotherapists definitely helps me with that and I try to do some laps before I leave the pool and this helps open my lungs up especially if I go under water a bit.

    As for getting a good nights sleep, I used to be like you, waking up lots during the night, but since Dr suggested 150mg Lyrica, I rarely ever wake up.

    ..If I do, because I'm worried or extra excited about it, I can safely take a 75mg. 150mg does me fine. It relaxes me and guarantees me a good nights sleep.

    I felt really alone with dealing with this but this forum has helped me immensely.

    Hope this helps you Keely...

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  • Posted

    Hi Keely, I was diagnosed many years ago and suffered these same symptons. With regard to the chest pains. They can be quite frightening as they feel very much like the start of a heart attack . I have had previously had a small heart ptoblem and thye frightened me. I found the best way to treat these was to take deep breaths and force my lungs to expand .This was quite painful but it did mean I maintained reasonable lung expansion. If you do not go this your rib cage can shrink meaning you can only take shallow btreaths later in life. This happened to my brother ,I was lucky he had it first so I knew what to expect. These pains do get less with time and I have not had them for a few years now.I found the best treatment for the general back and joint pain was Celebrex and gentle exercise.

    Good luck with it, things will get better.

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  • Posted

    Hi Keeley.  I too have As, diagnosed jsut over six months ago, but looking back have had it for a couple of years or mildly for longer.   I am 53 female.  My days are now pain management and enjoying the better days!.  I agree with the other posts here, especially getting a good sleep.  It is so difficult but so critical to how to endure the pain.  Get proper medical advice and help, but in the end it is what you do with it and the broader knowledge we all get from each others tips and experiences and a varitey of health proffessionals. Stretching is vital for me, but my Osteopath is slowly teaching me NOT to over do it too.  Its a long learning curve.  And for me, after hearing some of your stories I know I am still lucky.  Take care.  You aren't alone. K

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  • Posted

    Thank you to everyone who has replied, you have been a great help at reassuring me. I will see if I can get my physio moved forward and catch sleep whenever I can. Thanks for sharing you own experiences too, helps me feel as though I'm not alone!

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