Leg Pain - could use some advice

Whit

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Hi everyone,
I haven't posted much here, but it's great to see such a thriving community helping each other out. Quick background- I've had CFS for 4 years now and strange symptoms for about 3 years before that. I'm 28, male. My main symptom during that time has been fatigue with post exertional malaise, along with some more minor things like difficulty keeping warm, dry eyes, poor sleep, etc.

I used to get sore legs if I walked too much, but a month and a half ago it got much worse all of a sudden and I can hardly walk anymore. I got a wheel chair on Thanksgiving and that helps, but I'm worried my legs are now atrophying from not walking at all which will only make it worse long term. I'm hoping if I describe the symptom a bit here someone can offer some advice on whether this is likely CFS related and if anyone has any therapy recommendations.

The pain is a broad ache type, only in the back of the legs, in the back of the thighs and the back of my calves, but not the top of my thighs at all. It's brought on by walking. Specifically walking, crawling doesn't even seem to trigger it much. It's bad enough now that walking to the kitchen and back can trigger it so I've tried to stay in the wheelchair or in bed almost all the time but that's only going to make it worse in the long term. But it is triggered by walking because if I stayed in bed/wheelchair all day it would not hurt at all. If I ignore it and keep walking, it gets worse and worse until it's really painful, so I can't just push through it (as seems to be the pattern with CFS :rolleyes:) Interestingly, my arms don't seem to hurt at all from using the wheelchair, so it's not a general muscle use pain throughout the body, there's something specific happening in the back of the legs.

There is a muscle in the perineum that also has a similar problem that is made worse by orgasm. :Sign giggle: and that area seems pretty close to the back of the legs, and orgasm is a muscle use so I'm thinking they may be related.

Only thing that helps so far is hot baths and massage. Which are pleasant treatments :cool:, but not terribly effective. A pain doctor family friend recommends low dose Prapranolol for pain with CFS, but I'm trying not to take meds if I can help it for fear of side effects causing more problems.

Anyone have any thoughts? Has anyone had any luck with Prapranolol? Thanks!!!!!!!!!
 

Whit

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Here's a list of vitamins and supplements in case that's relevant. sorry for the long post!

multi vitamin, multi mineral, D3 2000mg, B vitamins sublingual (Source Naturals), Taurine 2k mg, zinc 40mg, k2, Omegas (large dose), Liposomal Vitamin C 3x/1000mg
 

Whit

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I think so. My multi-mineral has 500mg magnesium and I'm working with a nutritionist and eating very well for potassium. Lots of meat, vegetables, fruit, yogurt and occasionally brown rice.
 
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How My pain Is now manageble

I love magnesium supplements, they help w cramps. But for the leg pain, the best thing that ever happened to me is the compression socks, tried several brands and types and only one type helped (don't remember brand but they are open toed and ugly nude, bought at Walgreens).

I also have a great massage machine when I decide to go w/o the socks.
 
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hello i have siatica nerve pain and alot of back problems whcih cause alot of numbness pain...also restless legs and just the regualer pain that comes from fibro that effects everyhgin..
muscle rubs help some....hot bath..though sometimes hard to get in out of tub and have to rest sometimes when get out..but the warm water feels good...the pain medications help some..
ive not found any supplemnets just wanted to give you ideas if you havent tried any of the things thats worked some for me...also a heating pad helps some times..not alot but sometimes..

have you been checked for siatica nerve damage?
 

Whit

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No I haven't been checked at all, I don't even know who I would see because I have no idea what it is other than it is somehow muscle related in some way. A neurologist?

My pain doesn't feel like numbness at all. The fact that it got so much worse so fast a month and a half ago makes me feel like it could get better with the right therapy/treatment. As opposed to a slow worsening over years which would make me a little less hopeful.

I tried a different magnesium supplement today. We'll see if that helps....
 
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I know exactly what you mean. My legs have tortured me for 21 years with this illness. To make things worse, my legs and feet are nearly always in spasms. Not thighs, just all of it below the knees. The more I use my legs, the worse it gets. My legs just ache and ache.

Nothing worked except the following: Nettle Leaf Tea. You can get it from Starwest-Botanicals.com and other stores online. Boil the water, and then let the tea leaves soak in the water overnight. It doesn't exactly taste like anything. Sort of tasteless. Drink about 2 cups or more a day. If I skip it, I can really tell. It is not a cure, but is extremely pain relieving and alleviates the spasms.

Nettle has more minerals than any other plant on earth. This remedy is from Dr. Cheney, and he thought this would help, and it does.
 

*GG*

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I think so. My multi-mineral has 500mg magnesium and I'm working with a nutritionist and eating very well for potassium. Lots of meat, vegetables, fruit, yogurt and occasionally brown rice.
Probably not absorbing the magnesium from the supplement. Try magnesium malate or another form, someone else will probably chime in on other forms. How is your digestion?

Also, I didn't see you mention stretching. Would/does that help?

I can understand your concern with atrophy, are there some exercises you could do to help keep your legs "strong"? Would this cause PEM or pain still?

GG
 

Gavman

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Good question, i got mine dealt with through bowen until i was alright. Id say potassium/magnesium would be very useful as well.
Epsom salt baths will give you a reprise too. Good luck.
 

Whit

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What's Bowen?

I've been taking Solgar Chelated Magnesium 400mg per day for a few days now. I don't think it's helped. It is Amino Acid Chelated Magnesium Oxide. I also have some Magnesium Malate, but I need to try it slowly to make sure it doesn't hurt my stomach (the Chelated kind doesn't but many kinds do)

My digestion is not very good. It's gotten a lot better working with a Tibetan doctor who has given different herbs.

I'll try the Nettle Tea.

I got some compression leggings in the mail today, and they seem to have really helped! I got these from Amazon. Should I try more kinds? I wish there were some without anti-bacterial. I hate the idea of having anti-biotics on my skin all day. Completely absurd that they do that.

But if these compression socks and massage both help, it makes me think it is a circulation issue that is causing the muscle pain. I've noticed that my legs have been much colder and more susceptible to chills and cold air lately. I have to wrap them in an electric blanket. Anything else that might help circulation?
 

Gavman

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bowen technique - a form of hands on therapy from Australia.
Magnesium should help you feel more relaxed. Sometimes the -discomfort- in the stomach is from the easier movement there. If something is stuck and you free it up, it can bring pain. But trust yourself to figure out if its discomfort from the wrong type of magnesium and pain already there. Do you feel more relaxed is the important effect of magnesium. I'm big into potassium with magnesium due to magnesium not going well long term for me.