Chronic pain

[Marnz]

Hi everyone... I’m finding adjusting my life to manage my FND is increasingly difficult. My worst symptom is SEVERE pain. My pain wakes me all hours of the night usually 2-3am and it’s usually an excruciating migraine which I take my strong pain relief tablets for,aswell as a heat pack and lay in my recliner for hours waiting for the agony to ease so I can sleep. If anyone has any tips tricks ideas or things that may help, I’m desperate to hear them!!

[Mic67]

That sounds awful. My friend suffers terribly with migraines and is prescribed Triptans.

[laylagirl4]

I am sorry to hear about your pain. I relate to the migraines. I agree with Mic67,,,triptans are somewhat helpful. If you aren’t taking any I would discuss it with either specialist or your GP/primary care provider.

[Marnz in reply to laylagirl4]

Thanks for the reply laylagirl4 I’ve tried triptans but I have bad reactions to them heck I’ve tried just about all of them lol. I work in pharmacy so got the medication side covered. I guess I know I’ve tried everything in that department and was hoping out of the box ideas. I’m sorry to hear about your migraines I totally relate I just wish there was more help and services and awareness of our condition!

[laylagirl4 in reply to Marnz]

Aww am sorry to hear that. That really stinks! It’s kinda works for me. Takes enough of the edge off so I can try to get rest. B2/Riboflavin is good for headache/migraines. It can be used together with depakote for the treatment of migraines.

I just started taking it. I was going to look at the homeopathic route and going to see a naturalist. We are left in a quandary. It’s like trying to find that needle in a haystack. Trying to find that remedy that will allow us to go back to our “lives” prior to FND.

Good luck!!!

[Marnz in reply to laylagirl4]

I find the pain relief I’m on takes the edge off most of time but they’re opioids, as really it’s all I can take with my epilepsy condition also. I’m a vitamin consultant at work also and have tried the vitamin mineral and homeopathic route as my collegue is a naturopath and has been for 15-20 years and even he said to me basically what I already knew so that was disappointing lol. Speaking of work I’ve had to almost drop that completely due to severe pain,fatigue and dissociation. life before FND I’m so grateful I had and am determined to get bk there !!! Good luck to u too. I’m thinking I’ll try see if there’s any social or health related groups in the Brisbane area that’d be great I recon.

[M3rry in reply to Marnz]

Have you checked this is a true classic migraine? I get whole head pain (who dumped that truck of bricks on my head) pain, the longest lasted over 60 hours. Took me a while to get them diagnosed as anything other than 'stress' headaches. A good GP finally worked out they were cluster headaches - treated with a short sharp dose of prednisolone (5mg every 6 hours) - I rarely needed a second dose.

I know many people do not want to take steroids, and I agree they are dangerous. But this type of headache is more caused by inflammation than blood pressure and I consider it more like using ventolin. But if they are cluster migraine they can be inhibited by melatonin (only on prescription for sleep disorders in the UK), I really love that side effect.

[Marnz in reply to M3rry]

Oh wow that’s really helpful I should get my doctor to look into it further as I’ve suspected cluster migraines for a while

[cathys20]

I too am sorry to hear of the pain and unfortunately can really relate. Terrible migraines and all over pulsating pain. As I sit hear feel every inch of this body pulsating pain even in my feet. I cannot even stand someone to touch me. Its so hard and I have yet to find a relief so I too would like any suggestions. Dr.s do not want to give anything for chronic pain so too many days in fetal position body shaking in pain. IF not to nauseas I take a hot whirlpool bath. I am now on a feeding tube after 3 1/2 years waiting for Dr.s to figure out I had achalasia. My husband says he is watching me fade away and although we have had fantastic care at the Mayo clinic in the states still suffering with horrid stomach spasms and esophageal spasms. Even had the esophagus muscle sliced from throat to stomach and through spinchter, a surgery called a POEM. FND is very real and definitely not for sissys. Thank you all for the posts and help offered along the way. Not always easy for me to get to type on the site but am so very thankful for the support on this board. God Bless each of you, Cathy