Advice with managing pain

[Linsue]

I’ve picked up a lot of tips and advice from you lovely people in this community and am hoping for some on this subject. My husband was initially diagnosed ( as many others have been) with MS. Twenty years on an MRI proved it not to be the case and he was referred to Queens and diagnosed with Idiopathic Cerebellar Ataxia, that was back in 2010. He has been under local Neurology since the beginning with little support. Over the past few years pain has been his worst problem with nothing relieving it with the list of things tried filling an A4 sheet ! At the moment he has extream pain in his left leg from the front of his thigh to his knee. All tests have come back negative (bloods, CT, MRI.) Sleep is a premium, we don’t go out together, meals are prepared around ‘the pain’ and conversations limited because the pain is all encompassing.

Sorry I’ve waffled on …..we are so desperate to get our lives back to some normality and for me to see my poor hubby pain free (ish)

[wobblybee]

It’s not unknown for Neurologists to say pain is not a symptom of ataxia..perhaps not but some of us will disagree.

Muscular pain..can sometimes be relieved by stretching..sometimes medication needs to be considered.

Scroll down this link…for advice about pain.

nhs.uk/conditions/ataxia/tr...

[Linsue in reply to wobblybee]

Thanks Wobblybee unfortunately we have tried literally everything including physio, the whole range of so called pain relieving tablets like Gabapentin etc . The new neurologist says she can find nothing wrong and it could be emotional 😡 (my reply to that is not printable here !) She only works two days a month and leaves four month between follow up appointments so we go from month to month to month

[penelope2]

Hi there, sorry to hear your hubby is having such a horrible time.Just a long shot here but has he got a definite diagnosis of what type of ataxia he has? If it's still idiopathic (they don't know) then it's worth looking into gluten being cause of ataxia. The autoantibodies can cause pain in the muscles and joints.

Best wishes to you both.

[Linsue in reply to penelope2]

Thankyou penelope2 I will look into it