Over the last few months, I have begun to suffer with a permanently stiff and painful neck and wondered if anyone else with KD has experienced similar symptoms? As Bruce often comments, I am aware that it is important not to simply attribute any new physical symptoms to KD when the cause may lie elsewhere.

I first became aware of the problem when driving, finding I was turning my body to check left and right, due to newly-restricted neck rotation. Whilst this range restriction hasn't become any worse, the discomfort associated with it has progressively increased to the point where I regularly wake in the morning with a very stiff neck and accompanying headache. The headache will usually pass (after taking painkillers, if necessary), but the stiffness persists throughout the day. I will probably visit my (excellent) GP to seek his advice but, in common with most family doctors, he has no experience of KD.

Hi John. Yes I have the same symptoms together with weakness in my shoulder and left arm. I have spoken with my GP as well as my specialist. It seems to be part of the on going process.
Regards to you and everyone.
Graham.

John, this might not be associated with KD. Yes, your doctor might be able to help. Do you practice any neck exercises (range of motion and stretches)? They have been very helpful for me.

Normally, neck fatigue is something you can attribute to KD. Headaches or stiff neck muscles most likely are associated with some other health issue. Doctor first ... ask about a physical therapist while there.

If you want me to send you some basic neck exercises that I do every day, let me know.

Keep us informed.

Thanks Graham, I suspected it may be due to KD, although I suppose that two of us sharing the symptom is far from conclusive.

I, too, have weakness in the arms. I can do a limited amount of work at or above chest height before I need to rest. I recently installed new light fittings in our kitchen, standing on a step ladder whilst my wife was alongside supporting my elbow with a broom. We could hardly do the job for laughing at the absurdity of it all!

Wishing you and all other KDA members a good Christmas and Happy New Year.

John

Hi John.
I also have a stiff neck problem and have headaches in the mornings. I saw my consultant last week and he thinks it may be connected to my sleep patterns. I wake every two or three hours and never get 7-8hrs unbroken sleep. During the day I have moments where I realise I'm not breathing naturally and have to force a breath in.
I was told that poor oxygen levels during sleep time can cause morning headaches. He also asked my wife if I snore a lot. I dont as it happens. We all go into Shallow breathing mode during sleep. That coupled with weakened chest muscles could be a cause for low oxygen levels to the brain, which can lead to headaches.

The neck pain and stiffness may be due to muscle wasting but needs more investigation. The headaches start off at the back of my neck and seem to go over the top of my head, and down to the back of my left eye. I also have prominent wasting in my left arm, neck and shoulder. I will update this post once I have been to the Respiratory clinic.

Best wishes

Eric

I get a stiff neck when I use the wrong pillow. I have two; a "side sleeper's" and a regular one. If I use the fatter side sleeper when I'm on my back I get a stiff neck. Also if I use the regular pillow while sleeping on my side I get a stiff neck. Evidently the lack of muscle tone has caused me to be sensitive to misalignment of my neck while sleeping. Ask your wife to check to see if you spine, neck, and head are aligned while you sleep. Weird - but true...

I sleep on my back 100% of the time. I am unable to turn over once I lie down. I have an electric bed which raises my head and upper body to about 45 degrees. I then raise my feet to a comfortable level.
I need a non invasive ventilator to rest or sleep, this is because my Diaphragm is particularly weak. I cannot breath if I lie flat. The machine is set at 15 breaths per minute. My point here is that I am relaxed but never get more than 2 hours sleep without waking. I am comfortable but because of my lack of movement I do have headaches in the morning. As Bruce as said on several postings exercise can help. It does help but can be tiring. So I am all for light exercise every day.
Best wishes for the Christmas and New Year to everyone.
Graham.

John I had been having a great deal of neck pain particularly in the morning. After I read the article Bruce posted on the Living with Kennedy's Disease and discussing my symptoms with the physical therapist I added the range of motion exercises to my daily routine and it has provided significant relief for me.

In general I notice that if I skip doing my daily exercise routine I have more pain and discomfort. But I also find it easy to over do it and then suffer more pain for a day or two. The key for me is being consistent.

I also have some mobility issues with my neck, and CT scan has shown osteophytes on several vertebrae. Gentle regular stretches keep things flexible and keep the inflammation (which causes the stiffness) down. I also take an anti-inflammatory (Celebrex)

Thank you all for your replies and apologies for my delayed response.

My neck mobility has improved slightly, although still stiff and uncomfortable so I guess it's about time to book that appointment with my GP. The comments regarding pillows and breathing issues all have a familiar ring; if I use a firm pillow my neck is worse in the morning, but I prefer to avoid soft pillows as my face sinks into them, exacerbating the breathing difficulties I sometimes experience at night.

Well, despite exercise, painkillers and anti-inflammatory drugs, my neck became increasingly stiff and uncomfortable, so I finally went to my family doctor, who sent me for an x-ray. It seems that I have moderate to severe cervical spondylosis. i.e., arthritis in my neck. My late father suffered from this condition, with osteophytes which impinged on his spinal cord and eventually robbed him of his ability to walk. I also have moderate to severe arthritis in my hip joints, so, if KD doesn't get me first........!

Determined to keep mobile as long as possible, though. Trying a different anti-inflammatory drug (which is helping) and exercising daily. I remain optimistic, whilst recognising that my ability to do certain things may soon be curtailed and so adding a degree of urgency to some outstanding tasks. We began a total refurbishment of our house about 5 years ago, and I still have a few large jobs to complete before I can relax. Fortunately, my wife is very practical and helps provide 'muscle' when needed!

John, thanks for the update. I am sorry to hear that things haven't improved much, but at least you know what is causing the problem and everyone can focus on finding ways to help. Good luck, guy. Keep in touch.

Thanks Bruce, will do.