Interesting short read in The Lancet - Cervical Myelopathy
Interesting short read in The Lancet
How encouraging to read about the new research being done into this debilitating and life changing condition.
Hopefully in the next few years earlier diagnosis and treatment will become the norm as professionals and the general public become more informed.
It was approximately 14 years before my hubbie got an accurate diagnosis which led to surgery. Prior to that he was treated for post polio syndrome and carpal tunnel syndrome.
Myelopothy.org has been invaluable to us , giving us support and information as has this forum during this life changing time.
Hello there - I'm so pleased to hear it. The word is getting out there, slowly, but it is coming. The fact that myelopathy.org has finally had its official launch in London back in May & we have already attended 2 medical conferences - the first - the joint Society of British Neurological Surgeons & Association of British Neurologists in London last September & the British Association of Spinal Surgeons in Brighton in April means that word had spread quite far & wide nationally already. We were well received at all the events, I'm pleased to report.
Missed diagnosis & Misdiagnosis is very hard to bear - my GP thought that I myself had presented with carpal tunnel syndrome, which did not prove to be the case, so I can totally relate to you there. It certainly is life-changing, that's for sure. Sending hugs of solidarity to you both.
Kind regards
Shirley (mod)
I need energy to live my life. i need aderall or something and all i get from docs are antidepressants that do nothing. I have tried kind available nothing helps with the fatigue!! Help!!
Hi there noneck, I'm and others hear you ,I was in last stages of myelopathy and I'm know better and waiting to go back to Walton center as I have had a scan which showed more changes.
Hi Noneck
Fatigue is the symptoms I struggle with too - and it's been nearly 7 years since I was diagnosed & had my op - a C6/C7 Anterior Cervical discectomy & fusion.
A lot of the fatigue was caused by the heavy feeling in my legs - like walking through treacle. I didn't know it at the time, but it was due to hyperreflexia & muscle spasticity in my legs, which I have been left with as too much damage had been done before the op.
Baclofen - a muscle relaxant has been so beneficial to me - it helps loosen my legs up & I don't feel so tired when walking. I take 10mg 3 times per day - although other folk take different amounts depending on individual circumstances. But I still get fatigue to the point where I have to sleep for 3-4 hours during the day. So my life is a series of shifts between sleeping & waking.
But regarding fatigue in general, I take tips from a really useful group on Facebook called The Unchargeables facebook.com/theunchargeables/
Like us, they are chronic illness warriors.
The main message is to listen to your body & pace yourself. If you overdo things, it has a knock on effect for potentially days after. I struggle with this greatly as I don't take my own advice. So basically, it means for me that I have to lower my standards as to what I am able to achieve, so I don't get too frustrated.
You also have to be willing to ask for help when you need it. Delegating & prioritising are very important tools to help you cope.
If you can afford it - get a cleaner in to help is one possibility. Similarly, if you can afford to pay to have your groceries delivered , then do so. Or if you have children - give them extra pocket money for big jobs like washing the car or moving the lawn etc.
I also use advice from The Flylady from flylady.net/c/lp.php a free website full of tips & tricks to manage your household. The main thing is that do something in 15 minute chunks - if you can't do 15, the do 10. If you can't do 10 then do 5. She also advocates "progress, not perfection"
The main thing I do is that for walking longer distances - i use a mobility scooter as I need to conserve what energy I have to care for my kids & pets. I don't see it as a failure - it enables me to live a much fuller life than I would be able to.
So those are just a few of my tips.
If anyone else reads this, feel free to post yours.
Kind regards
Shirley (Mod)
Well glad to hear that works for you. For me I cannot deal with this fatigue and low energy and post op pain. No matter what I do it's like living half of a life.
You misunderstand me - I'm making suggestions re what might help - I'm not in a financial position to take much of my own advice. I understand what you are going through more than you know, Indeed I still take antidepressant medication since my op. it's just that I am in a better place psychologically & can see things much clearer. Apologies for any distress caused - it sounds like you would benefit from some form or counselling &/or medication to help you cope. Low mood & depression are also zappers of energy. I'm sorry that you feel so down about it all.
I hope you can find a way forward. The fact that you are talking about how bad you are feeling is a great starting point.
Best Wishes
Shirley (mod)
I appreciate all of your advice and helpful hints. I have been in counseling and on antidepressants for about 7 years. No antidepressant helps me. I have tried them all. I am seriously speaking to my counselor about getting something for this fatigue next week. I need medication for this.
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