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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Wed Aug 13th, 2008 08:03 |
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Thanks for telling me about your bunion!
I've been on the MP for 20 months, however, I think I was near death before starting and have had heavy IP just to begin to feel that death and I are no longer becoming such good buddies. Still my health is pretty fragile. My immune system must have my bunion situation down low on its list of things to do!!!
Thanks again...now I can look forward to wearing nice shoes again too!
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Dave L
Member in Phase 2
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Posted: Wed Aug 13th, 2008 16:53 |
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Howdy all!
I've been getting excruciating leg cramps in the early morning hours. They are preceded by a tingling sensation, then WHAM! the calf or shin muscles clamp as if provoked by an electrode. Sometimes I limp for a few hours after getting up until the muscles relent.
VEZ advised magnesium supplements, so I am taking up to 750 mg before bed, but so far the agony continues. Carol gets these as a result of light and IP.
I am too inexperienced to know what triggers these - I doubt I am getting IPs, in fact I have pretty smooth sailing other than the cramps.
Any suggestions, insights?
thanks,
Dave 
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Wed Aug 13th, 2008 17:02 |
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| Okay, this will sound odd. This, I believe, is IP--at least for me. I used to get them years ago and then they went away. So I ocassionally get them now UNLESS...don't laugh...I eat potato chips (well, a lot of potato chips). That's right. It's so weird, but guaranteed. At any rate, I tell you this in case there's something odd triggering them for you. When I get them during the odd non-eating potato chip times, I try to walk them off and also I avoid pointing my toes in a stretch, as that seems like I'm asking for them. Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Dave L
Member in Phase 2
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Posted: Wed Aug 13th, 2008 17:32 |
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Claire, you are absolutely right: that is odd! I am with you on the toe pointing bit, though. Sometimes I can head a cramp off at the pass while in bed by carefully and alternately extending and bending my ankle joints, but I count myself lucky when I pull this off. Maybe I can find a gastronomic equivalent to potato chips....
thanks.
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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eClaire
Member in Phase 2
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Posted: Wed Aug 13th, 2008 18:05 |
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| I flex my ankles and finds that that sometimes heads them off as well. This was not an IP I was happy to see return! I used to get these cramps in my late teens. It's so weird to see the same sxs 30 years later. Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
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Posted: Wed Aug 13th, 2008 18:22 |
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I am too inexperienced to know what triggers these - I doubt I am getting IPs, in fact I have pretty smooth sailing other than the cramps.
Almost certainly an IPR of some sort. I've had cramps on and off as well. Sometimes in the legs, other times elsewhere.  Magnesium may help sometimes, but other times it's probably just IPR in the nerves and it will continue until the bugs have been eliminated. Stop being in denial, you are getting some IPR here, it's just not debilitating IPR. As your D levels go down, things may pick up!
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Juanita
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Posted: Wed Aug 13th, 2008 19:10 |
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I get that burning nerve pain. It feels like I'm being electrocuted, then the leg spasms into either a muscle charley horse or it will jimmy leg. (seizure like kicking) It's an IP. When I found that the magnesium didn't work for me either, I tried small chunks of brand name Valium and that works like a charm.
Isn't it awful??? 
While it's happening, I keep chanting, At least it isn't my heart.
Oh, and my fingers twist also, but they shift around. For a while it will be the pointer finger, then a month or two later it will be the ring finger. I think of it in terms of Chinese accupunture/ energy modality also. And my right hand is worse than my left.
Last edited on Wed Aug 13th, 2008 19:12 by Juanita
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Dave L
Member in Phase 2
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Posted: Thu Aug 14th, 2008 00:31 |
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Knochen, Juanita:
OK, maybe its IP. I'm not in denial, I just didn't want to over dramatize it if there was a garden-variety explanation.
About the Valium: Carol mentioned this too, and again I confess ignorance - I thought it was used just for calming psychological stress. OK to use for muscular complaints?
thanks again for your thoughts.
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Deb Grabetz
Advocate
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Posted: Thu Aug 14th, 2008 00:44 |
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Hi Dave,
I experienced this also about six months into the MP....It was excruciating. My husband would rub my legs until it stopped hurting...yikes, I forgot all about that until reading your posts. I would seriously roll from side to side in bed I was in so much pain...Hang in there...before you know it...it will vanish!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Aug 14th, 2008 00:44 |
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Valium can even take the edge off of pain (that's why dentist's offices use Valium or similar drugs).
This is what I wrote in my alumnai PR about my MP toolkit:
What I've Learned about my MP Toolkit: Aussie Barb frequently refers MPers to the idea of developing an MP toolkit. And I've thought that my toolkit should contain only those strategies and palliatives that work for me. However, as my body has changed (on the MP the body is a eco system that is changing as the CWD die off) so has what works for me. And so now I imagine a rather large toolkit that stays in my truck. I carry a tool belt now instead--that is, those things that seem to be working for me now. When the tool no longer fits, I throw it back into the tool kit and try something else. Later, that tool may be perfect for me once again. So flexibility in thought and action is key.
Claire
Last edited on Thu Aug 14th, 2008 04:19 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Freddie Ash
Member in Phase 3
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Posted: Thu Aug 14th, 2008 01:35 |
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HI DAVE L
This is Fred in WV. I have have had cramps(Charliehorses) since I had a kidney stome cut out(Feb 1985). The doctor told me to drink enough water to put out 1gallon of fluid a day to keep the stones away. A few months later I started having these cramps every where in my body, feet, legs, chest, hands to name a few. I remember having them so bad that at night I would wake up with one in my left leg and I would jump out of bed to shove against the wall and before I could do that my right leg had the same cramp. My family doctor ran blood test 3 times before he noticed that my sodium was so low that he called my house and wanted me to put salt on every thing that I was eating, even the water I was drinking. Evern now on my last blood test in June my sodium was 137 and low norm is 136. So mine was caused from low sodium. I was maybe the only heart patient that was ever told to EAT MORE SALT. How about that one.
So what eClair is eating chips, they may have had salt on them and that may have been her problem, not the chip themselve. You should have the mag & sodium check to make sure of the levels.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
Member in Phase 2
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Posted: Thu Aug 14th, 2008 02:49 |
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My goodness Freddie, I think you have it. My sodium is low. When I eat the chips, it probably raises up rather quickly and drops off quickly because the rest of my diet doesn't have enough salt. It's probably the quick drop in sodium that makes the cramps worse! Well, I've been increasing my salt intake with salted drinks (two times what I was doing). I'll see how my labs go and if there is room to add more, I'll add more. Thanks for the insight!!!
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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expate
Member in Phase 2
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Posted: Thu Aug 14th, 2008 04:01 |
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eClaire wrote: Valium can even take the edge off of pain (that's why dentist's offices use Valium or similar drugs).
This is what I wrote in my alumnai PR about my MP toolkit:
What I've Learned about my MP Toolkit: Aussie Barb frequently refers MPers to the idea of developing an MP toolkit. And I've thought that my toolkit should contain only those strategies and palliatives that for me. However, as my body has changed (on the MP the body is a eco system that is changing as the CWD die off) so has what works for me. And so now I imagine a rather large toolkit that stays in my truck. I carry a tool belt now instead--that is, those things that seem to be working for me now. When the tool no longer fits, I throw it back into the tool kit and try something else. Later, that tool may be perfect for me once again. So flexibility in thought and action is key.
Claire
What a wonderful analogy!!!
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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carol
Advocate
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Posted: Fri Aug 15th, 2008 06:19 |
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Dave L wrote: About the Valium: Carol mentioned this too, and again I confess ignorance - I thought it was used just for calming psychological stress. OK to use for muscular complaints?
Dave:
Valium's use for muscle cramps/spasms is an "on label" application, according to the PDR (Physician's Desk Reference). TM recommends the name brand, and I have found a big difference between name brand and generic.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Dave L
Member in Phase 2
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Posted: Fri Aug 15th, 2008 07:49 |
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Carol, Freddie, eClaire, Deb, Knochen, Juanita, expate, et al:
what a great bunch you are! Thanks so much for your thoughts and suggestions. Meg suggested more Benicar when I get the twitches (prior to a spasm) and I tried that last night and it seemed to work - YAY! Next time I get blood tests I'll have the sodium checked. I may not go for potato chips, but maybe salt cod in the Newfie or Norsk fashion.
I am turning in now (been a long business trip trip to north central BC, then home to the Yukon tomorrow) and I am perversely almost looking forward to a spasm to see if the Benicar intervention works. If not I'll nosh down salteld nuts in absence of dryfish.
Carol: thanks for enlightening me about Valium; I will check it out. There is so much to learn.....
cheers, and thanks again to all,
Dave
Last edited on Fri Aug 15th, 2008 07:51 by Dave L
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Knochen
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Posted: Fri Aug 15th, 2008 12:25 |
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I may not go for potato chips, but maybe salt cod in the Newfie or Norsk fashion.
Dave, cod is particularly rich in Vit D. You sure you want to do that? Seafood in general is to be avoided on the MP.
Glad the benicar worked for you, that's a good indication it's IP going on!
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Juanita
Member in Phase 2
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Posted: Fri Aug 15th, 2008 16:52 |
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Oh, mercy, yeah. No salt cod. Sorry. D source, eh? My guy had just gone onto a fish diet to lose weight when we found the MP and he had been LOVING eating all that salmon. Fish is full of d. He's also not thrilled that I cut off all the fat off the beef neither, but d is d.
A quick google hunt shows: Brand name Valium is a a benzodiazepine derivative drug. It possesses anxiolytic, anticonvulsant, sedative, skeletal muscle relaxant, and amnestic properties. It is commonly used for treating anxiety, insomnia, seizures, alcohol withdrawal, and muscle spasm.
Meg told me to take benicar first and she's right, it's the first response. Sorry, I forgot to say as that's so common, I don't even thing about it anymore. And then if the trouble continues, I'll take small rocks of Valium until things are right again.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Dave L
Member in Phase 2
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Posted: Fri Aug 15th, 2008 17:18 |
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Darn. Of course you're right about the fish. I expect that salted, dry moosemeat would be OK though. We can make lots of that. And the results of last night's spasm/Benicar showdown were somewhat ambivalent...
cheers,
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Deb Grabetz
Advocate
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Posted: Fri Aug 15th, 2008 17:47 |
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Dave,
Fish seems to have been a very big factor in me flaring both times that I did. Of course, I knew nothing at the time about Vitamin D or the Marshall Protocol. I don't know if some of us are more ultra-sensitive but the fish consumption put me over the edge and I doubt I will ever be comfortable eating it again.
No doubt, it was an accident waiting to happen but clearly the first time I became so ill, I had taken a liking to scallops. Would often just cook up for me a couple times a week and before that rarely ate fish. The second time I became so ill, I had started eating more salmon as I was feeling tired and thought it would help, along with taking some fish oil, along with going to Alaska and shipping our catch back to Michigan, again consuming more than normal. Within four months of that trip I was seriously ill-- It has been a rough time for me but a blessing to find the MP...no more little fishies for me... Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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eClaire
Member in Phase 2
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Posted: Fri Aug 15th, 2008 19:00 |
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Oh, there's also a chemical in foods that is immune modulatory and there's a whole thread having to do with that somewhere on the MP.
For example, for some, a small amount of coffee makes them feel better and others, worse. (It's recommended that we not consume more than one small cup a day regardless.) Apples do the same and one apple a day is permitted (which I pair with cheese for the carb/protein balance).
At any rate, I don't even like apples, but when I started on the MP and was having an extremely rough time of it, I craved them and then TM came out with information on these immune modulatory chemicals in certain foods and that made sense of my apple craving (my IP is not as bad right now and the apples are just sitting in the crisper).
So, if you are having a bad IP, you can also try eating an apple and see if that helps you feel better (if it makes you feel worse, you know that's not working for you RIGHT NOW).
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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