1st movement after waking triggers violent muscle spasms

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Scott1
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Re: 1st movement after waking triggers violent muscle spasms

Post by Scott1 » Thu Sep 21, 2017 1:08 pm

Hi,

We've got a choice. Do we link the muscle tightness to the food or do we link it to what you were doing whilst the food was being prepared?

Do you sit most of the day or move around? Are your toes relaxed or do they curl up? What makes your muscles tighten apart from food?

Regards,

THX1138
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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Thu Sep 21, 2017 2:34 pm

Scott1 wrote:Hi,

We've got a choice. Do we link the muscle tightness to the food or do we link it to what you were doing whilst the food was being prepared?

Do you sit most of the day or move around? Are your toes relaxed or do they curl up? What makes your muscles tighten apart from food?

Regards,
1) I'm on my feet less than 15 minutes a day, or less :oops: . 2) Toes are curled. 3) Dehydration
I think I am low on blood (chronically).

I've been setting a timer app called Blip, Blip to ring every 10 minutes. I stand up when it sounds. This way I don't sit as much.
Last edited by THX1138 on Thu Sep 21, 2017 4:16 pm, edited 1 time in total.

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Re: 1st movement after waking triggers violent muscle spasms

Post by jimmylegs » Thu Sep 21, 2017 2:46 pm

re toes, clarification question out of curiosity. do you mean curled UP as in ^ as in babinski or 'curled up' as in curled up tight like your foot's version of a fist?
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Thu Sep 21, 2017 2:49 pm

Clawtoe. Curled down. Good question

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Thu Sep 21, 2017 2:59 pm

Sometimes when I've eaten enough and drank enough water during the day, late in the evening when I step, I can raise my feet about 8 inches off the floor. Whereas earlier in the day I can barely pick my feet off the ground at all and the right foot often tilts down and scrapes the floor. No such thing late in the evening if I've eaten and drank enough.

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Re: 1st movement after waking triggers violent muscle spasms

Post by Scott1 » Thu Sep 21, 2017 3:31 pm

OK,

We have to discard the MS umbrella. It confuses rather than clarifies so thanks for providing such detail. If your medical advisor has let you get in this condition then maybe you need to consult elsewhere.
I think you need to be able to objectively dismiss the obvious so do have a fasting glucose test, get your iron levels checked, check B12 and D (if you like, not something I focus on). You do need a doctor to think about your symptoms as something other than MS.
Recheck for infection. Look for EBV, mycoplasma, chlamydia Pn, Heliobacteri Pylori and whatever else your doctor wants to try. That includes any nutritional reading. If you are really lucky you may be able to get a fasting amino acid study. What that study can show gives you way of working back to associate with symptoms.
Why? Because you need to reestablish your base line by objective tests
The concern I have is you haven't switched off all the avenues for inflammation. Any strategy for recovery will struggle if you are still struggling with a chronic overload of something.
I'm not sure I really know what you mean by low on blood. If it means fatigue then try the supplements I mentioned earlier and do megadose the Q10 but use a practioner brand from behind the counter and not one you can grab off the shelf. You will have to ask.
Try what I suggested for breakfast and make it the main meal if you are struggling with meals . Go back to Paleo and give up the gluten, the dairy and Pulses (for a while anyway).
If the result of all this is you get some energy back then we have to make you move. Prior to that you will have to get daily massages to start working the muscles and importantly free up the fascia. I use a really well trained girl and an Osteo. The girl makes massage cost effective but the Osteo does dry needling. If your toes are curled you need both. They curl because the tendons on the sole of the foot (The plantar) are too tight. When the calf is also tight it pulls on those tendons through the connective tissue. The tightness in the calf can come from further up the leg. This is not going to be a quick process but you need to move to avoid becoming locked up. To try to stop the curling when you stand get one of those foam toe separators that ladies use when they paint their toenails (It must have a name!) and wear it as you walk in the house in bare feet or socks.
The dehydration keeps making me think about blood sugar but a doctor is the best to try.

Hope that helps

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Thu Sep 21, 2017 4:48 pm

I'm not sure I really know what you mean by low on blood.
I mean low blood volume.

Some time ago I got this idea from: https://www.healthrising.org/treating-c ... romyalgia/
To me, it seems to explain a lot of my symptoms.
---------------------------------------------------------
...get your iron levels checked,...
Collected:
06/14/2017 4:40 PM

WBC 6.2 10e9/L 4.0 - 11.0 10e9/L
RBC Count 4.71 10e12/L 4.4 - 5.9 10e12/L
Hemoglobin 15.1 g/dL 13.3 - 17.7 g/dL
Hematocrit 44.6 % 40.0 - 53.0 %
MCV 95 fl 78 - 100 fl
MCH 32.1 pg 26.5 - 33.0 pg
MCHC 33.9 g/dL 31.5 - 36.5 g/dL
RDW 12.8 % 10.0 - 15.0 %
Platelet Count 214 10e9/L 150 - 450 10e9/L

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Re: 1st movement after waking triggers violent muscle spasms

Post by jimmylegs » Thu Sep 21, 2017 4:55 pm

his b12 is fine and his d3 status will be constrained at present in the context of low normal magnesium. i can't imagine how much more challenging it all must be with a pancolitis dx in the mix. hopefully getting that serum zinc sorted will make some kind of difference to GI integrity. resistance to any infection will be in the dumper while zinc is that low.
PT is gold in my xp. some things nutrition just won't touch - it takes physical manipulation. hurts but worth it.

ps nice hemoglobin number, for whatever that's worth
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Re: 1st movement after waking triggers violent muscle spasms

Post by Scott1 » Fri Sep 22, 2017 12:28 am

Hi,

I forgot all about the pancolitis. Obviously that's inflammatory. It's also way outside anything I have experienced. Sometimes those who have walked the walk are more useful than the talkers. This thread is about ulcerative colitis but it may give you some ideas http://www.medhelp.org/user_journals/sh ... st-a-penny

I do still think you need to boost ATP availability. If you are struggling with fatigue or tight muscles then lack of ATP on demand is a problem.

Regards,

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Fri Sep 22, 2017 9:13 am

Regarding the pancolitis: About a year ago I had some rectal bleeding and blood on my stools which was bright red. I had occasional diarrhea but most of the time I was constipated, as I had been for many many years. I had a colonscopy in which the examining doctor noted inflammation throughout my colon. I was diagnosed with pancolitis.
2 Interesting facts: 1) The bleeding went away before I had the colonoscopy and before I started taking the mesalamine; I haven't had it since. 2) My only possible symptom has been occasional discomfort on one side of my abdomen.

For the colitis I take Citrucel and mesalamine. Other than occasional discomfort on one side of my abdomen I don't have any symptoms that I can think of.
I'm very pleased that I don't have the nasty symptoms that many do from colitis.
I have some doubts about this diagnosis, but am not asking about it, only if you want to comment on it.

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Fri Sep 22, 2017 10:00 am

Corrections, Clarifications, Additional Info
I will be adding to this.

A) I had said that the morning muscle spasms last less than a minute and then go back to normal (for me). Actually, while the initial violent extremely strong spasm subsides in less than a minute, my muscles remain tight and more reactive after the initial muscle spasms. They get better throughout the day if I eat and drink enough. In the evening, if I've eaten and drank enough water, they will often become pleasingly good, allowing me to walk unaided for a few steps. And I'll repeat that the longer I stay in bed the worst the muscle spasms are when I finally move. Staying in bed longer also causes greater tightness spasticity of the muscles through much of the day.

B) My main MS symptoms are: Muscle Spasms, Low Energy, Brain Fog, muscle spasticity, poor bowel and urinary control (when I notice the need to go, it is URGENT - 1-10 minutes depending on how much I move - movement and change of body position ie sitting to standing greatly increases the urgency,), erection difficulties, vision issues, including the muscles surrounding my eyes being tight and causing problems with the coordination of the eyes, moderate weakness all over when I get extra dry.
It seems that these all come down to muscle problems and energy problems. Both of which seem to come down to blood flow?

C) The niacin flush makes most, if not all, of these way better.

D) Yawning causes my muscles to tense up and shake. Once the yawn is over, the muscles return to normal. The strength of the muscle tensing and shaking correlates with the strength of the yawn. For example, when they yawn is at its apex, so is the muscles tensing and shaking.

E) Cold hands, warm full head that's what I have when I'm doing poorly. It's the warm head part that concerns me. The cold hands, warm head seems to be worsened by not eating enough food and or/not drinking enough water, and I do drink a gallon of water a day, so my water intake is not unhealthily low.
When I do a niacin flush, it starts with my head and my head feels warm at first, but then is a flush moves down my body my head gets to feeling cool and clear. As far as I can tell it's not merely relatively cool, compared to when the flush was making my head warm. But my head feeling cool I mean that it no longer feels warm and full as it does most of the time. It doesn't actually get to feeling cold or anything. Many symptoms, such as spasticity and brain fog get WAY BETTER during the flush.

F) I've been mentioning that my hands get nice and warm and tingly with the blood veins sticking out if I've eaten enough food during the day. One thing I neglected to mention is that every morning when I wake up my hands are like that too. This goes away within an hour of getting up. Then starts the hands being cold most of the day until the evening, if I've eaten enough by then. I'm pleased to announce that in the past few days the hands have been warm more often during the day.
Last edited by THX1138 on Wed Sep 27, 2017 6:41 pm, edited 2 times in total.

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Re: 1st movement after waking triggers violent muscle spasms

Post by ElliotB » Fri Sep 22, 2017 12:31 pm

Just curious... are you following a gluten free diet?

"muscle problems and energy problems. Both of which seem to come down to blood flow?"

That could be. It could also be a nutrient deficiency. Or possibly something else. Have you had comprehensive blood work done recently?

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Fri Sep 22, 2017 12:42 pm

ElliotB wrote:Just curious... are you following a gluten free diet?

"muscle problems and energy problems. Both of which seem to come down to blood flow?"

That could be. It could also be a nutrient deficiency. Or possibly something else. Have you had comprehensive blood work done recently?
For 3 months I was on the Paleo AIP until earlier this week. That eating plan excludes many foods, including gluten.

What is included in "comprehensive blood work " I probably have

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Re: 1st movement after waking triggers violent muscle spasms

Post by ElliotB » Fri Sep 22, 2017 12:51 pm

Are you still following a gluten free diet? I found it made a noticeable difference for me (especially with brain fog ) and many report similar experiences and many benefits.

As far as blood work goes, doctors often start with a CBC test, which is a complete blood count that gives information about the cells in a patient's blood, such as the cell count for each cell type and the concentrations of various proteins and minerals.

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Re: 1st movement after waking triggers violent muscle spasms

Post by THX1138 » Fri Sep 22, 2017 1:23 pm

Collected:
06/14/2017 4:40 PM

WBC 6.2 10e9/L 4.0 - 11.0 10e9/L
RBC Count 4.71 10e12/L 4.4 - 5.9 10e12/L
Hemoglobin 15.1 g/dL 13.3 - 17.7 g/dL
Hematocrit 44.6 % 40.0 - 53.0 %
MCV 95 fl 78 - 100 fl
MCH 32.1 pg 26.5 - 33.0 pg
MCHC 33.9 g/dL 31.5 - 36.5 g/dL
RDW 12.8 % 10.0 - 15.0 %
Platelet Count 214 10e9/L 150 - 450 10e9/L

And minerals... Earlier, zinc and copper have been discussed. I've just started working to get my zinc up to a high normal level and to have zinc higher than copper.

Proteins... I don't think so.
Last edited by THX1138 on Fri Sep 22, 2017 2:14 pm, edited 1 time in total.

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