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Old 03-17-2008, 04:49 PM #11
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I deal with spasticity and pain in my calves and upper thighs every day. I take a combination of Soma and Klonopin now to help deal with it.

In the past I have taken Sinemet/Sinemet CR (http://www.webmd.com/drugs/mono-41-L...-Levodopa+Oral) which helped a lot but the stomach upset side effects just got to be too much for me. The doc upped the lodosyn by 25 mgs to help with it but I decided that in combination with all the other meds I was taking that I would just switch to something else less toxic to my stomach.

I also have a B-12 deficiency which causes some of the same symptoms. I get monthly B-12 injections and can tell when it's time for my shot as the spasticity does increase.

As Judy pointed out about weekly massage, that has been a great help. I get weekly deep tissue massage by a certified massage therapist and she really knows what she is doing. She is not one of the "boutique" spa massage people. I have been going to her for about 3 years now.

It's a combination of treatments that get me through each day...it's not just one thing...you have to find what works for you. I found a percussion massager that helps at night when my feet cramp up so bad that I wake up screaming in pain b/c my toes have curled up and won't release.

So, yes...we all have our demons with this disease. We have to find what works. Baclofen did nothing for me, nor did Zanaflex.

Keep looking for what helps you. My doc was completely puzzled as well b/c what everyone needs to understand is that meds don't work the same for everyone. The Parkinson's Disease drug I mentioned above worked, but I have such a sensitive stomach, that it just wasn't the drug for me.

I also took MTX to treat my MS in conjunction with Betaserson. Did you take shots or oral? That in and of itself can make a difference.

Keep looking Jan, you will eventually find the right combination to help you.
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Old 03-17-2008, 07:12 PM #12
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I'd talk with rheumy #2, tell him no matter what he thinks you have, those meds seemed to help your pain. And ask if you could try them again.

What do you have to lose? You do think they helped right? If not, hit the ignore button lol.



If you try them again, you'll know for sure if they were working, or if you jusst gained more pain sinc you stopped taking them and it was a coincidence.


If that's the case, he can try something else.

Good luck tho Jan. I hate to see ya suffer.
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Old 03-17-2008, 10:58 PM #13
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Yes Brain we are on the same page, I have cont with the Plaquenil that the 1st Rheumy was giving me. And yes I see improvements. So when I run out of this RX I will see what my body goes through and YESSS I will return to him and tell him. THat med is bad for the retina's so you have to have it checked by a Neruo ophl.

YES I think the spasticity is my only constant symptom along with Buzzing. Its bearable tho.

The little quarter size pain in my upper arm left after nearly a year. It was soo intense that my PCP thought it was bone cancer !! SHe had an xray done just in case. Man its was an intense as a toothache!!!

AvIgirl, the ONLY thing that has taken away the leg/calf spasticty was Methotrexate!!! I hated it but notice my legs got all flabby...hahahaa
Then off of it..back to rock hard muscles.

WHEW.. I am much better and doing well. THANK you all for your help

Gratefullyl, Jan
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Old 02-13-2020, 02:45 PM #14
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Hello!
I hope you will see this, even though your post was 12 years ago. We have very similar symptoms, etc. I was MISdiagnosed with MS also... then yes, this terrible muscle pain has taken over now. My neurologist did a muscle biopsy after a slew of genetic tests and has diagnosed me with idiopathic small fiber peripheral neuropathy. Most people seem to have burning though rather than aching, sharp, crushing-like pain. Have you found anything that works for the pain??
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Old 02-13-2020, 07:09 PM #15
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You could have osteoarthritis which I've been dealing with for over 60 yrs. Some days I b urn in certain areas of my body, lots of stiffness and sore muscles and lots of stuff. There are MANY arthritic supplements one can work with: glucosamine, shark cartlidge, and so many things we can try. Doing nothing is not the answer or just stay with pain meds. So much out there to work with but give them time to take hold in the body. All this pain and burning can bring on neuropathy.
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Old 02-13-2020, 11:39 PM #16
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Quote:
Originally Posted by caroline2 View Post
You could have osteoarthritis. [...] There are MANY arthritic supplements one can work with: glucosamine [...]
This article about use of glucosamine as a supplement for management of osteoarthritis may be of interest to members.

Glucosamine for osteoarthritis: It doesn'''t work and could cause harm, scientists say
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Old 03-02-2020, 01:52 PM #17
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I've had osteoarthritis for years but it's not so much muscle pain as joint pain, stiffness, swelling, and sometimes redness of the joints that are hurting.

So far I've been taking 4 aspirin a day, and that does help. But one finger has permanently limited mobility and the others are somewhat deformed. Elbows are a problem too. The arthritis is also in my spine, and I have quite a few back pain problems--pain episodes, sciatica. I get leg cramps at night sometimes but those seem to be connected to a low potassium level or maybe spasticity due to MS.

10paindaily, the small fiber peripheral neuropathy is a different problem, and your pain sounds quite different from mine. I notice that you say in another thread that you don't have diabetes but have you been tested recently for it?
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Old 03-02-2020, 02:32 PM #18
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I have been supplementing with MSM powder for many years. 2 tps daily for sure. 1 tsp with 8 oz spring water in morning, one about later afternoon say way. Many take capsules but I prefer to use the power here and it does help with pain, dulls it. I live with advanced OA for about 60 yrs....and it advanced over the years...started at 18 and I'm 81.

https://draxe.com/nutrition/msm-supplement/

On the gluocosamine, I take 2 capsules of Cosamin DS daily, dosage calls for 3 but I take 2. A dear friend who died at 95, walked to the end and believes this supplement kept her moving. She was a marvel..
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Most important supplement: grape seed extract
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