i am still floating around in limbo,having been through cognitive theraphy and to back pain specialist,and now come away,with him saying he cannot help my back problem,as he could make me ill,and trigger a relaspe which would be very dtrimental to my well being.he beleives i could have fibromylagia,with something else going on underneath this.with my theraphy with my spcologist,she says i am as undiagnosed by my neurologist but!! …,i may be diagnosed in five ten fifteen years ,who knows,but that i should accept i will not get better,i have now been living with yes i have a neurological illness,but there is a time where one day i may get a diagnoses.however it is so so so tough living this way,i do have pregabalin ,and diazapham to help my back,but it scares me when i am stiff getting up,and the weight i feel on rising,and the dragging down feeling of my hips,i feel i am unable to stand up,can anyone relate to this,when my back is bad,it swells at the bottom lumbar region,and the coccyics are always tender.i can go back to my psychologist again if ifind lifes challenges difficult,i was refere4d by my neuro,as living with longterm neurological illness. your thought i will be grateful to read thankyou,and wishing us all agood year 2012 .
What a b***** about the back specialist not being able to help
Have you tried physio? A neurophysio might be best as they will be more knowledgeable about your neurological problems, but still know about back problems - your GP can refer you to one.
The pills you’re taking wouldn’t do much to reduce swelling or inflammation in your back. Have you tried anti-inflammatories? I have a chronic, untreatable back condition and found that diclofenac worked really well for me. Of course, it might not work for you, but perhaps it’s worth a try?
I’ve never had to live very long without a diagnosis so I can’t ever really understand what it’s like, but I’m sure it completely sucks
Your psychologist’s suggestion sounds like a good one: accepting that you have a neurological condition that isn’t diagnosable yet. We know a lot about the brain and the nervous system, but we have really only scratched the surface of all that’s going on. We are learning more and more all the time though so one day you may well get some answers. For now though, putting it to one side and getting on with your life has got to be better than pursuing something that is frustrating, draining and may not even be achievable, yet.
hi karen,thankyou for sharing your thoughts with me,i have been trying to answer your post but,couldn’t get through.i wonder do you feel this wighty feeling in the hips,i am agin suffering this ,more on the left side,i have recently been suffereing nystgmus,but now last few days i havev a pain a little higher than temple,i also suffer itching on my scalp,but a stinging itching.i can appreciate what you say,with living my life,and i know with support from dr purt,it is extremely difficult,thankyou for your thoughts, love bozxxx
I have, or have had, nystagmus, stinging & itching scalp and skull pain as well as heavy legs. Whether what I feel and what you feel are the same I wouldn’t like to say, but these are pretty typical neurological symptoms. The stinging, itching and pain can be helped with meds if they don’t go away soon - so if you aren’t coping with them, please ask your GP for help (for example, an increase in your pregabalin might make a big difference).
thankyou for your help ,i will chat with my gp soon,it is such a releif sometimes to knowwhat we suffer we are not alone,thankyou,i think the pregabalin is the one to help,thankyou,realy scarry when i suffer the heavy weighty feeling frim my back to hips,as i wonder if i am not going to fall to the floor,hope you are keeping as well as you can.
hi karen, i have been trying to add new post, but it keeps saying i am unortherised,should i get in touch with my neuros secretary to see him,he said he would see me,when he had bothreports in,i last him last march.
There’s something wrong with the forum - no one can do new posts If both reports are in, then I guess a wee reminder wouldn’t hurt - I’d phone if I were you anyway. You can always ask your GP to write too. Kx
i am so releived it isn’t just me,i really miss the old site,it was so much easier somehow to post messages and get around.i am due to see my gp in a couple of weeks,i will ask him if he will get in touch with my neuro,it does worry me i may just slip off the clinic,he is such a lovely neuro,iwouldn’t have the strengh to try alow.l over again.i do feel i have come to a different level than i was,it is being aknowledged more now.fingers they sort our site soon,i value it so much and all our buddy friends,i have tried topost out to lolly,can you remember her,she is great,but i don’t how to get in touch here,i remember val knew her,i will keep trying ,thankyou Karen,for all your help and adice means alot.
If both reports are in, then I guess a wee reminder wouldn’t hurt - I’d phone if I were you anyway. You can always ask your GP to write too. Kx