Pain what really helps.

[Signe]

I have been having so much trouble with pain. It feels like someone is scraping my bones with a dull knife. I've tried all the otc meds and most of the creams. 2 creams help with the muscle pain, both have arnica, one with lidocaine and the other CBC. But I have a deeper pain that nothing seems to reach. My pcp doesn't want to prescribe anything saying ALS is painless. I don't go to an ALS clinic till August. Any ideas are welcome.

 

[azgirl]

best thing I tried at your stage was medical Marijuana. There is lots of info about it here if you use search. Als is not painless. I hope you find relief. I experimented until I found the right combo for me. It is hybrids cbd and thc. We all are different!

 

[KimT]

First, you PCP is full of crap. Can you get to a pain management specialist for some real help?

My pain management specialist is a neurologist. He has dealt with other PALS and all have had some degree of pain, some horrible, even while they're still mobile. He is also certified to recommend medical cannabis, thanks to my constant hounding him for a year.

I've tried prescription creams (very strong with five ingredients) but what helped most is THC topical cream combined with CBD oil under my tongue. If the pain is terrible, I take 1/4 of a 15 mg. Oxy to break the pain cycle and it seems to work. I alternate tylenol and Advil on a daily basis. NSAIDs tend to mess up my stomach so I can only use Advil a few days a week.

Other things that provide relief are consistently using my lift chair with a heating pad on my lower and mid- back, adjusting my bed and putting a pillow under my knees to take the pressure off my back, not overdoing it physically and trying not to stay in one position for too long. Very gentle massage as helped, warm showers before bed followed by THC cream on all the sore spots really helps with both sleep and comfort.

PT helped my knee but I found a good therapist who followed my direction and listened to me.

I have a torn rotator cuff and a combo steroid injection/lidocaine helped for about three months.

 

[Signe]

Thank you, I contacted the ALS clinic where I will be going to in August. They are going to review their schedule to see if I can get an earlier appointment. I live in Iowa so I don't believe medical marijuana an option. But right now I'm ready to try about anything. I am wondering if my pain is related to low oxygen levels. I noticed that the nights I have a high AHI on my bipap I feel the worst. I'm bulbar onset so my diaphragm is weakened already.

 

[Signe]

Thank you, I contacted the ALS clinic where I will be going to in August. They are going to review their schedule to see if I can get an earlier appointment. I live in Iowa so I don't believe medical marijuana an option. But right now I'm ready to try about anything. I am wondering if my pain is related to low oxygen levels. I noticed that the nights I have a high AHI on my bipap I feel the worst. I'm bulbar onset so my diaphragm is weakened already.

best thing I tried at your stage was medical Marijuana. There is lots of info about it here if you use search. Als is not painless. I hope you find relief. I experimented until I found the right combo for me. It is hybrids cbd and thc. We all are different!

Thank you. I'd like to know what is the cause of the pain. I'm thinking that it is related to low oxygen levels or co2 buildup. Any thoughts on that ?

 

[lgelb]

Pain apart from headache isn't usually caused by respiratory insufficiency per se but fatigue caused by imbalance between O2 and CO2 can definitely make you more sensitive to it. I will message you in case you want help tweaking your BiPAP settings to lower your AHI/improve your comfort.

Best,
Laurie

 

[notBrad]

Take a small ball peen hammer and give your PCP a good rap on the knee cap and tell him that it's not supposed to hurt. It won't ease your pain but surprisingly enough it will make you feel better...

 

[KimT]

You might not be able to get medical cannabis but Charlotte's Web CBD oil can legally be shipped anywhere in the US. It isn't cheap but it's effective and will give you some quality sleep. Just google it. I buy from Stanley Brothers but it is available from other suppliers as well as some retailers. Much of the CBD in the market now is weak and nothing more than a scam. If I miss my nightly dose I can tell.

 

[Vincent]

There are probably 2 things going on here. Your PCP doesn't know ALS very well and the fact most of the medicines used to control pain are respiratory suppressants. This is especially true of opioids. This is why lots of PALS use cannabis. A good medical grade with a balance of THC/CBD of one to one controls cramping, spasticity, pain, works wonderfully as a mood elevator and is a great sleep aid all without respiratory suppression. I don't know the legalities of cannabis are in Iowa, but if you cant buy legally try neighboring states.
Vincent

 

[Signe]

I may have to try that if this continues. Some days are really intense, but I've also had a few better days recently too, which helps. I did get an earlier appointment at my ALS Clinic for my first visit. I'll see what they saw. July 30 now instead of late August.