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551343 tn?1506830518

Help with pain in PPMS

Long time no see, finally diagnosed February 2016 with PPMS.  Can I ask you how do you deal with the pain which is worse now especially so in my legs? I dont do well with the MS drugs and my pain doctor said they are not suited to me.   Anything i can do to make my life easier?

The pain and fatigued are now out of control. My doctor is great and she just did a full blood panel to make sure there is nothing else going on, but the bloods are good, and she maintains it is my PPMS and just suggest rest. If i rest much more i will be comotose.  Any other suggestions on how to cope with the pain?
3 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi MrsAristotle,

Over the years here there seems to be a better success rate when pwMS have specifically gone to pain clinics and had an individualistic treatment plan tailored to their situation worked out for them, so with that thought in mind i would recommend you request a referral to a reputable pain clinic in your area to see how they can help make your pain situation better.

Hugs.....JJ
2 Comments
Hi supermum, i did go to a specialist pain clinic and saw a doctor who had nothing to offer me, but the usual stuff i had tried which simply do not suit me, even he said himself, they mainly just space us out and can make us more tired.  His only offering was diazepam 2mg, and for me to attend a mindfulness clinic.   I went for the assessment for the mindfulness clinic and it was ridiculous. I told them i was way too tired in the afternoons, and the only clinic they had was 2pm in the city which was 30 minutes away and i had to find someone to take me.  Mindfulness well they sent me a link was just a cop out really. I might as well just listen to calming music lol.

In the UK it seems there is nothing for PPMSers.  I havent seen my neuro for well over a year, my GP looks after me, and even she has nothing to offer apart from support.

I just wondered if there was some other drug known that is used and how other PPMSers cope with the constant pain.  

Thank you for taking time to answer me i really appreciate it. I used to run a group on Medhelp for people in neurological limbo land.
"I used to run a group on Medhelp for people in neurological limbo land." yes i remember it well!

Pain clinics are different the world over, and vary within countries, the states seem to have a better options and success with their pain clinics but i'm sure there are rubbish ones over there too.

This link will give you access to the uk MS societies pain publications, there might be something for you to try in them...

https://www.mssociety.org.uk/ms-resources/pain-and-sensory-symptoms-booklet

another thought i had was specifically contacting the uk MS support groups or foundations in your area and request pain management advice and what ever assistance they can provide to you to help with your pain.

I know thats not much but hopefully something gets you going in the right direction, hmmm you could try looking up smart patients to see if there is anything pwMS have mentioned about pain treatment options there...

Hugs......JJ
1530171 tn?1448129593
Hi Maria, it's been a while!!!

Anyway, my 2 cents worth of  imput regarding MS and pain.

There's a significant component in the onset of MS and consequently fatigue and pain, which has to do with carbs (specially gluten), yeast ..

A harmful substance called tartaric acid, which needs carbs/sugars to grow and is antagonistic to malic acid-an instrumental factor in the Krep's cycle ( a sequence of biochemical reactions in the body to release stored energy)- has been associated with fatigue and pain.
Yeast and fungal toxins ( they feed off sugars) are a common  finding among MS sufferers,  as is low vitamin D (or normal D levels but with vitamin D resistance present)

When yeast and fungal micro-organisms escape into the bloodstream they can affect the brain and the nervous system and cause auto-immune reaction
( engaging a mechanism known as molecular mimicry )

The cells of the affected system(s) suffer a loss of energy (lowered voltage) unable to remove waste, to repair and to renew, resulting in impaired function, pain, fatigue etc.

Pain clinics, cannot address these underlying issues and are only there to help lower temporarily the pain perception through artificial means.

I have mentioned most of this several times in the group.
So the key is to act on it by first confirming the presence of substantial levels of yeast/fungal organisms, high tartaric acid (simple urine test which also shows other yeast byproducts),vitamin D levels and gluten intolerance assays including gluten cross reactivity testing (to rule out other foods to which the immune system reacts the same as gluten).
OR:

In lieu of these tests (how many neurologists have ever suggested any of them???... with the exception of vitamin D testing, which BTW cannot verify vitamin D resistance and thus nearly never  checked by conventional doctors , consider a challenge--> A combination Gluten free diet, elimination diet, low carb diet, focusing on organic, fresh & nutrient rich foods,
taking raw unfiltered apple cider vinegar (best source of malic acid) 2 tablespoons daily, coconut oil 3-4 T daily,
no seed/vegetable cooking oils (pro-inflammatory!!!)
Taking 10000 IU vitamin D3 weekly and 1000 mg quality omega-3s.
If one feels better after 2-3 months, it would be very indicative of the aforementioned imbalances being contributing or causative factors.
Cheers,
Niko

6 Comments
No offence to anyone but this is a widely held theory with complementary and alternative medicine practitioners that is being attributed to the 'cause' of many different diseases and has very little scientific evidence to substantiate all what is being claimed...

"There's a significant component in the onset of MS and consequently fatigue and pain, which has to do with carbs (specially gluten), yeast .."

"Yeast and fungal toxins ( they feed off sugars) are a common  finding among MS sufferers"

Be wary of making such statements about MS in any MS community without backing it up with reputable MS research publicised clinical trials and or similar same recommendations made by any MS society...

I highly recommend to anyone with MS to discuss any restrictive dietary changes, elimination diets and high dose vitamin regimes with their primary physician, neurologist etc

Mrs A i did some more research into what is available in the UK for pwMS and i stumbled across was a lot of MSers recommending getting an assessment with an MS knowledgeable physiotherapist or occupational therapist.

There seems to be good and bad pain clinics everywhere and even the uk pain association recommends you shop around until you find one that provides what youre specifically looking for, apparently pain clinics are not all the same.

Might be worth contacting any of the other pain clinics near you if the only treatment option offered at the one you went to was diazepam, which is used in multiple sclerosis primarily for the relief of muscle spasms and spasticity but its definitely not the only treatment option for muscle spasms and spasticity! Hmmm have you considered botox?

Hope that helps.....JJ


supermom, it intrigues me -in a rather negative way- to see your willingness to characterize me as something short of a snake-oil salesman.

--Fungal toxins and multiple sclerosis: a compelling connection.--
Abstract:
Multiple sclerosis occurs as a consequence of central nervous system neuronal demyelination. Decades of research suggest that the primary suspects (e.g., viruses, genes, immune system) are associative rather than causative agents, but a surprisingly coherent relationship can be made between multiple sclerosis and fungal toxins. Specifically, certain pathogenic fungi sequester in non-neuronal tissue and release toxins that target and destroy CNS astrocytes and oligodendrocytes. Without these glial support cells, myelin degrades triggering the onset of multiple sclerosis and its associated symptoms. We propose here that fungal toxins are the underlying cause of multiple sclerosis and thus may offer an avenue towards an effective cure.
--source:  Brain Research Bulletin 2010;82:4-6.--

“Tecfidera”s ( MS drug)  chemical name is dimethyl fumarate.
According to the Journal of Food Science a concentration of dimethyl fumarate inhibited mold from growing on bread.
It is an anti-mold & anti-fungal agent.
Hmm, any possible connection with what I mentioned in my previous post?

"The role of vitamin D in multiple sclerosis: biology & biochemistry, epidemiology and potential roles in treatment"
CONCLUSION:
There is an abundance of epidemiological evidence, both direct and indirect, as well as significant biological plausibility substantiating a role for vitamin D in the onset & progression of multiple sclerosis.
--Ref: PMID: 28933265.--

You speak of:
"...reputable MS research publicized clinical trials and or similar same recommendations made by any MS society..."

From the Open Payments Data, pharmaceutical manufacturers of
MS drugs paid  in the latter part of 2013 alone almost $14,000.000 to MS Neurologists to prescribe their drugs: Aubagio  Avonex  Betaseron  Copaxone, Gilenya , Rebif ,· Tecfidera, Tysabri
In the same period pharmaceuticals paid National MS Society advisory and research committees'  Doctors, over $350.000, according to Open Payments Data (public information).
PHDs and other research staff do not appear on this list, as it is required by law that pharmaceuticals  report only payments  to physicians (perfectly legal in the US under... consulting and speaking fees)

- Pharmaceutical Giant, Merck- Serono, Agrees to Pay $44.3 Million to Settle False Claims Act Case in connection with the marketing of the drug Rebif in 2011.
Sales  of Rebif in 2012 were $2.4 Billion.


Oh BTW, Merck owns the company which runs MedHelp.

You can draw your own conclusions,
but please be fair with your coments
for the sake of all fellow MSers.
There's a lot more to health care and treatment than what's in the conventional medical box.

Cheers,
Niko










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"supermom, it intrigues me -in a rather negative way- to see your willingness to characterize me as something short of a snake-oil salesman"

Niko I'm totally perplexed where you got that idea from the words i specifically wrote, it is not in my nature to characterize anyone....where i come from telling someone "to be wary", is a respectful non combative way of giving someone a heads up.

My only intent was to politely help ward off any potential trouble you (or anyone else) 'may' encounter by making factually styled statements about MS to MSers

With respect, you stated carbs (specially gluten), and yeast were a significant component in the onset of MS and that yeast and fungal toxins  are common finding among people with MS....there is definitely potential in the theories but the research studies so far have not 'as yet' drawn definitive evidence to substantiate any conclusions...

In regards to making the specific recommendations as you have to pwMS, it is only in an MSers best interest in mind that i recommended pwMS "to discuss any restrictive dietary changes, elimination diets and high dose vitamin regimes with their primary physician, neurologist etc" due to the complexity of MS and the inherent dangers in doing so without any medical guidance!  

"Long-term safety
The verdict is still out on the long-term safety of low-carb diets. They tend to be high in total fat, especially saturated animal fat, which has been linked to heart disease, cancer, and perhaps even MS. The low-carb craze also restricts fruits, vegetables and whole grains. This can result in deficiencies of valuable vitamins, minerals, phytonutrients, antioxidants and fiber. All of these are important to long-term good health.

People with MS need to plan for the long haul. Maintaining a healthy weight is important, and while carbohydrates may contribute to weight gain, it’s calories that pack on the pounds....

Special considerations for people with MS;

Fatigue—Ketones can curb appetite, but they can also cause fatigue. This can compound an already significant problem for someone with MS.

Bone health—Changes in mobility and periodic use of steroids may put people with MS at increased risk for osteoporosis, a state where the bones become porous and brittle. High–protein diets not only limit some calcium sources, they can cause the body to lose calcium.

Constipation—MS can contribute to chronic constipation. A diet rich in fiber and fluids, along with exercise, is important to help manage this problem...."

https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition/Low-Carb

"Research studies in the area of diet have generally been of inadequate size and design to provide useful information about dietary strategies in MS. The evidence available thus far related to dietary factors is insufficient to establish either efficacy (how well a particular diet or supplement works in the structured environment of a controlled clinical trial) or effectiveness (how consistently or persistently people can use a diet or supplement in everyday life).

While additional research is being conducted on diets in MS, the following recommendations are based on what is known today:

- Limit sugar and processed foods
- Increase fruits and vegetables
- Choose lean sources of protein (including chicken, turkey, soy products,
fish, beans)
- Choose healthy fats (polyunsaturated fats from nuts, seeds, vegetable oils and
oily fish)
- Consume adequate fiber and fluids"

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Wellness-Discussion-Guide-for-ppl-wMS-and-HCPs.pdf

PEACE........JJ

I will do my best to make my few points as clear and as consiise as possible
Hmm it submitted accidentally..
Anyway some of my important details got missed.
-- NMSS allows advisory and research committee members- doctors,PHDs and other research staff to receive funding
from the Pharmaceutical  Industry.
Perfectly legal in the US- paid under speaking and consulting fees- but highly unethical and definitely conflict of interest
This is a fact and NOT my opinion*
I urge MSers to be more careful  & vigilant with any research, decisions and recommendations from NMSS that might affect their lives negatively!

* public information - these payouts to  Doctors by pharmaceutical corporations must be disclosed under the Affordable Care Act, in the Open Payments Database website.

- CRAB/ DMD medicines (for MS) efficiency and safety data is limited by the term of the studies/trials and not relevant for the long-term. The long-term effects and interactions with other drugs - are mostly unknown!

I was very specific that my aforementioned suggestions in my previous posts-if followed- should be done as a 2-3 month trial/challenge in lieu of testing ( some of which could be considered "unestablished",
or even controversial when dealing with conventional doctors who may know very little about them ).

Any reference to the long-term effects of low carb diets etc. prior to completing the suggested challenges is premature.

Best wishes,
Niko



I for one don't take offence with other peoples reasons for posting what they choose to, i may not understand why, agree or disagree with posts but it is well worth everyone considering sticking to the thread topic and trying to not stray too far off topic by providing opinions or information that has little to no relevance to someone with PPMS and their request for suggestions on how to cope with the pain.....JJ
1530171 tn?1448129593
Hi again Maria.  

In regards to vitamin D supplementation, I neglected to mention that a deficiency of tissue magnesium -based on the principle that vitamin D needs a lot of magnesium in order to convert into its active form- would  lead to a "functional" vitamin D deficiency.
Naturally the higher the D3 dose the more magnesium would be necessary
Vitamin A and K2 are also necessary for vitamin D conversion.
Blood tests for magnesium are not useful, since only tissue magnesium matters here.

Such a situation will impact calcium metabolism on top of all the consequences of low magnesium and low vitamin D, which would be enough to totally ruin one's health!

Unfortunately conventional doctors nearly never investigate and address such concerns, so patients must be proactive and take these health matters in their own hands, so to speak.

Cheers,
Niko
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