Need opinions on meds and suppliments

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healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 11/30/2008 7:30 AM (GMT -7)   
I hope everyone had a wonderful Thanksgiving weekend.
 
I have been having problems with muscle spasms in my ribs off and on.  I have also had lots of issues with muscle pain. I also have bad burning off and on in my feet.   That is why they thought the MS was Fibromyalgia originally.  My body is not good with most drugs.  I tried Baclofen once and it made my stomach upset so I am using flexeril.  That has a bad side effect of dry mouth but seems to work.  I tried cymbalta for two days but again my stomach was upset.  We werent sure if it was the rebif or the cymbalta since I was only one month into the rebif.  I might try it again.   I have heard that fish oil helps lots with pain and stiffness but have read it might not inter act well with the rebif.  Do any of you take fish oil or tried it and if so what happened.  Also is there anyone that takes Lyrica?  I have taken it before and it did help but had lots of side effects and was hell to get off.  I am still at that experimental stage of what works for my daily symptoms and routine.  I have tried neurontin and got hives.  I can't take SSRI's.  Any help or suggestions is appreciated.  Right now I am taking rebif, 1/2 of a .05 Ativan 1 to 2 times a day.  1/2 a 10mg flexeril in the afternoons or more for rib spasms, citrical D, darvocet as needed and advil or tylenol (8 hr when doing injections).  I 1/2 everything because of the sensitivity to meds.  Sorry for the long post.  Just need input from the experts.  Also is there anything that helps with the shakes or vibration when it hits or is rest the only thing that works on that? 
 
Thanks,
Cindy

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 11/30/2008 8:39 AM (GMT -7)   

Hey Cindy,

You are doing what you need to be doing which is experimenting until you find what works for you.  There is only one Cindy and that Cindy happens to have MS.  You will just have to keep messing with meds and dosages until you find what works for you.  I am not very helpful as I really don't take much for symptoms.  I take baclofen and klonopin when I need it.  I use adderall everyday for clearing out the brain fog.  I take copaxone for progression.  I have "bengay boots" every afternoon but I just ignore it.  I am very lucky that I don't have any consistent pain issues. 

I take a ton of supplements.  Some of those I am convinced work, others I am not so sure about.  Again it was a solid year or maybe more of just messing with stuff to figure out what was working for me.  If you want more info about the supplements, just ask me.  Most neurologists don't hold much stock in them.  Mine is a firm believer in "if you think it is helping then by all means take it." 

I hope someone else can offer more specific support to you.  Hang in there, Cindy.  It does get easier to manage after a while. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/1/2008 4:17 AM (GMT -7)   

Thanks Gretchen for your reply.  The flexeril seems to work when my legs get really sore and feel like they are tight.  For now I am sticking with what I know works some.  I can't seem to get away from the burn in my feet very long.  We will see.  I suppose if it gets worse I might be back on the Lyrica.  Thanks again.

Cindy


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/8/2008 6:39 PM (GMT -7)   
Hi Cindy,
I am also very sensitive to drugs, supplements, food additives, in fact anyhting synthetic. I have had 3 anaphalatic shock reactions. I took Baclofen as a tablet & only 10 mg made 9 nerves jump in my face & they went on jumping for 6 months after I stopped the tablet. My allergies built on each other until I was allergic to nearly everything including most food. I was going crazy until I desensed using comprehensive kineaseology which helped greatly, I can eat nearly everything though drugs are still difficult. But last year pain & spasticity got so bad that I did not know how to continue. Dr suggested baclofen in pump cos its particularly good for people who are allergic (he says I have 1/300 of the normal dose) and it has been positively miraculous for me. I have had it for 8 months & now have no pain & much more flexibility. It does make me shaky but I have beem improving this by improving my strength with a stepper, Wii balance board & cross trainer. I swear by good fish oil (its an anti inflammatory & good for heaps of things). I only stopped it once in 12 yrs, got blurry vision, started it again and vision cleared?? My dr says 3000 mg a day max dose if you are taking it long term cos it does thin the blood. Love & Light
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/9/2008 6:49 AM (GMT -7)   

Hi Popsie

I have an appointment with my neuro day after tomorrow and have a whole list of stuff to discuss.  Fish oil is one of them.  I am also hoping that she has some insight to the ringing that I have been having in my ears the past week.  I am hoping it is sinus related and not MS related.  I have never had this before and it is sure annoying.  Thanks again for the post.  I am glad to hear you have found something that works and makes you feel good.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 12/9/2008 7:04 AM (GMT -7)   

Hey Cindi,

You may ask about these supplements.  I take COQ10 with fish oil.  But many people with MS are low on vit. D3.  It must be D3 and no other form of D ( D is not absorbed or utilized by the body realy well).  Also Niacin is supposed to be an anti-inlfammatory.  It causes a horrible flush for the first few weeks, but it is part of why it works.  There is anti-flush version but that one is known to be hard on your liver.  The flush lasts about 30 minutes and is a bit like an allergic reaction.  It is less noticable if you take it after a meal.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/9/2008 7:07 AM (GMT -7)   
Thanks Gretchen,
 
I will ask her when I see her Thursday.  She just checked my D levels and B levels and said they were ok but I am up to try anything.  Thanks again.
 
Cindy
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