Right now I'm waiting for an appt at Mayo. My doctor sent a referral, so hopefully they will give me an appt! Meanwhile I'm not on any treatment, just trying to regulate the pain.
It seems like there's a cycle--pain increasing until I have insomia, then I crash and sleep, but wake up incredibly weak and then the cycle starts again. Anybody else notice this?
HalloJustme
I have been diagnosed wth CIDP end No 1999 and am fortunate to have learnt a LOT from the Prof at Neurology and from my treating specialist Neurologist. I get 8 x 400 ml IVIG Polygam every 8 - 10 weeks and take 100mg Azathioprine daily. I have weak legs but 100% normal after IVIG. I take Vit B/Neuobion injections once weekly at pharmacy and take 1 fizzy SlowMagnesium tablet at night - for a good night's rest. I have no pain whatsoever but my sight has deteriorated a bit. Otherwise, I plan to have SoluMedrol drip 3 x week to see whether I can rule out IVIG - apparently some CIDP patients do very well on MS medication. Good luck to you, try an keep your pecker up, will be thinking of you. Best regards, MissJones (Cape Town, sunny South Africa!!)
Justme said:
So sorry you are struggling like this. I usually don't post here...I keep to myself and read when I can and I'm pretty new to the world of CIDP, but I was surprised that there was someone in a similar situation to myself. I am getting IVIG every 3 weeks, though the treatment before last didn't make a bit of difference, so I don't really know how much it is helping. I am told that "pain" shouldn't be a prominent symptom in CIDP, but I guess my body didn't read the memo! I've been told I may also have transverse myelitis in addition to CIDP. The pain I get is a DEEP, GNAWING pain in my back and legs, like a hundred rodents chewing on the deepest parts of my bones/muscles while in back labor! I can put up with a lot of pain, but this has done me in! And I noticed myself becoming depressed because of it. I cannot tolerate most medications. The side effects are just too much, so other than ibuprofen and the occasional tramadol when it gets unbearable (that really helps me), I tough it out, which is hard with young kids, a big dog, a husband in the Army who is often away, and no family around to help out. I started trying to figure out what I could do to help my body heal itself (I have a friend who "accidentally" overhealed himself and his vasectomy healed/failed...more than once!) It's only been a few weeks, but I SWEAR it's making a difference in the pain. My neuro recommended I start taking ALA (Alpha Lipoic Acid 600mg/day) when I couldn't tolerate gabapentin (Neurontin) for pain. Not sure if that helps but it got me reading anyway. I started juicing fruits and veggies after I watched the movie Sick, Fat, and Nearly Dead where a guy with an autoimmune disease helped heal himself this way. I am not doing a juice fast, just having one for breakfast and maybe a snack. So I get some concentrated nutrients and vitamins there. I am also trying to eat better and avoid a lot of refined sugars/starches and MSG (also called modified food starch on labels). I also started taking 4000-5000 iu of Vitamin D3 daily along with a good multi-vitamin and sometimes a B complex. And I just started to use a natural Progesterone cream (Emerita Pro-gest) for the last 14 days of my cycle as my pain seems to worsen with my cycle too, but it is not what you'd expect to be "female" pain. Interesting info I found out about progesterone (you can use it both pre-, peri-, and post menopausal but you use it differently), it has anti-inflammatory properties, as well as is involved in repairing the myelin sheath around nerves!! That is what got me REALLY interested! Maybe all my "stuff" IS related afterall! So, I take the Progesterone cream with a Magnesium Taurate supplement and a high dose high quality fish oil pill at bedtime and for the first time in my life, I am SLEEPING at night and waking up somewhat refreshed! Without Ambien! As I said, it's only been a couple weeks, and my legs still bother me, but not as badly, but my back is much better, and the sleep is SO much better, and I'll take what I can get. It hasn't helped the paresthesias, but the pain is more manageable. I know it sounds like a crazy complex combo, but I'm desperate and since the prescribed medicines only seem to make me sicker with side effects, I will keep this natural approach up as long a it works. Heck, if I have to be like a supersitious baseball player at bat, standing on my head, spin around, tap the ground, whatever...as long as it works! Just thought I'd share my experience. Please don't take this as a recommendation for yourself, as I am not giving out medical advice, but wanted to let you know there might be additional options for you. I'm considering this my "integrative approach" using conventional medicine and treatments along with alternative and I plan to start acupuncture soon. Please keep us updated on how you're doing. I wish you WELL!
Insomnia is the only thing I share a bed with these days, I hate being absolutely physically frazzled knowing full well that the last thing I'll be able to do is sleep, then sleeping a whole day away just because your brain simply cant take anymore and shuts down
I suffered from insomnia for over a year. I would get to the point I couldn't function--mentally or physically. I was sleep walking, eating in my sleep, trying to leave my apartment. I was taking Ambien time release and all my other night meds. Nothing helped until my dr. increased my Tizainadine for the severe muscle pain I was having at night. I will still have some nights of insomnia, but just a few compared to every single night.