pain management

[Ultra1]

Hiya,

My name is Keith I am 66 years old and have been diagnosed with MSA-P in November.

I am looking for advice and guidance on my pain management. For the last few years I seem to be hitting a brick wall in regards to pain relief. I am currently prescribed Madopar, and unable to take sinimet due to worsening side effects. I have also recently been prescribed pregabalin but i don’t seem to be getting any relief from it.

My current daily symptoms are; aches and pains in the neck and shoulders, upper arms through to hands as well as lower back, this has recently moved to my rib area. With significant weakening of my legs. I am currently mobile and walking without aids, however have had a few recent falls which could have been prevented due to me not following guidance on falls management. I also suffer with severe exhaustion.

[SamanthaMSAT Moderator Staff]

Hi Keith,

Thank you for your post.

Pain management really depends on the type of pain and the cause.

Muscle rigidity/stiffness can be helped with Levodopa (Parkinsons medications), neuropathic pain (burning /stabbing sensation) by drugs like Gabapentin. Coat hanger pain across the neck and shoulders is caused by low blood pressure and is only relieved by increasing the blood pressure.

If you are registered with the MSA Trust, I can make contact with you later today to discuss.

Kind regards,

Samantha. MSA Trust nurse specialist.

[esj20]

Hi there

I’ve got you on this, my prescribed medication is Gabapentin, 300mg thrice daily .

The neck and shoulder pain is described as coat hanger pain. I’ve also very painful lower back.

In-between Gabapentin I take ibuprofen which works for me, well it makes life easier.

Mobility, use everything possible to keep upright and moving. Unfortunately I’m now confined to my wheelchair.

Speak to your Gp, neurologist and MSA nurse.

Someone told me that MSA was generally pain free ……..! I beg to differ.

Yours

Alec

[Ultra1 in reply to esj20]

I am currently on pregablin 300mg twice a day my carer has advised I take co codadmol in between doses to help relieve pain. Tramadol didn’t work for me due to severe constipation.

[GHG_]

Hi Keith, you have just summed me up perfectly. I recently started using Tramadol which I think is helpful. I was on Gabapentin as well but read that Pregabalin works better so I switched to that. To be honest I'm not sure it makes a lot of difference. I too suffer great exhaustion. My neurologist prescribed me Modafinil, it's not normally used for MSA it is mainly used for narcolepsy. I find that it helps with the exhaustion, Im normally asleep half the day without it. I hope that some of this is of help to you. Hang in there Keith 👍

[Ultra1 in reply to GHG_]

Thanks for responding back, that’s interesting to know in regards to modafinil. I will ask my consultant about this medication as I am exhausted all the time and has my CPAP. Machine for sleep apnea each night. Thanks for the support much appreciated

[Reader103]

good morning Keith, I was suffering with extreme exhaustion. My doctor arranged for me to go to the sleep clinic and be monitored. It turned out I have sleep apnea, which is common with MSA. I was given a CPAP machine which made a big difference. I would suggest you request being checked to see if you have sleep apnea.

[Ultra1 in reply to Reader103]

Thanks for responding back I do also suffer with sleep apnea and use the CPAP machine each night, I do suffer still with exhaustion, I am currently awaiting a new assessment from sleep clinic.

[67G00dwyns]

Hi Ultra 1

I was diagnosed with MSA-P in late 2018 and was prescribed Madopar and am one of the lucky ones in that it still works but only in a high dose. I take 400/100 5 times a day.I also take midodrine to increase blood pressure to releave coathanger pain, also fludrocortisone. I have found it’s trial and error with the levodopa and am one of the lucky ones that it still works on the pain and stiffness.

[Ultra1 in reply to 67G00dwyns]

Thanks for responding back, I am currently taking fludrocortisone in the morning. Blood pressure seems to be all over the place at the moment which I think is implementing heightened symptoms.