MS Hug information - updated 4/2/13

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Re: MS Hug information - updated 3/25/13

Postby HappyPoet » Wed Mar 27, 2013 6:12 pm

lovebug, it took me a year of horrible MS hug pain until I stumbled upon trigger point and nerve block injections for the MS hug on the Internet. Still can't believe my doctors didn't suggest these to me.

Fwiw, the only med on that list that has ever worked for me is methadone--I've been on it for twelve years, and it helps some of my neuro pain. Methadone maxes out at ~100mg/day, but I needed more help than that max amount for the bad hug attack. Between the methadone and the injections, my hug pain is now being controlled. In fact, I've been able to lower the amount of methadone I take which affords me more room to increase it if I have another really bad MS hug attack in the future.
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Re: MS Hug information - updated 3/25/13

Postby HappyPoet » Wed Mar 27, 2013 8:19 pm

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Re: MS Hug information - updated 3/25/13

Postby Azaeleaprawn » Wed Mar 27, 2013 10:08 pm

when I went emergency with left-side & middle back acute stabbing pain & a tight feeling around my chest which I said I thought might be an MS hug. - the doctor at emerg said he never heard of an MS hug ...and I thought WTF!
Gave me a muscle relaxant ( I have a sneaking suspicion he went and checked online for some help) and luckily it seemed to work over time - haven't had it again.
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Re: MS Hug information - updated 3/25/13

Postby HappyPoet » Thu Mar 28, 2013 11:09 am

lovebug, the only home remedy I've tried is marijuana which I've found helps with spasms/spasticity. Within one minute--as fast as an IV--my muscles start to loosen :)
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Re: MS Hug information - updated 3/29/13

Postby HappyPoet » Sun Mar 31, 2013 11:17 am

lovebug,

I was finally able to do more searching, and here are some more ideas for relieving pain:

NMSS Clinical Bulletin wrote:Self-taught techniques of mindfulness, meditation and behavior change strategies empower pain
coping (Molton, 2009). Mindfulness is the awareness and acceptance of the present moment and
any feelings, thoughts, and sensations that may arise (Ludwig & Kabat-Zin, 2007). Acceptance and
commitment therapy are behavior change strategies leading to psychological flexibility, better control
of thoughts, feelings, emotions, sensations, and memories of pain. Learning to transcend self and to
clarify personal values are strategies practiced to self-manage pain (Hayes et al., 2011).

Behavioral self-management includes: relaxation training, cognitive-talk therapy, adaptive coping,
pacing and behavioral activation. Engaging in social and physical activities decreases the intensity of
pain (Jensen, 2011; Ehde, 2006). Taking a painting class, participating in yoga, tai chi, hippotherapy,
riding a bike on a beautiful day are examples of behavioral activation. Participating in counterirritation
such as massage, the use of heat or cold, acupuncture, and application of pressure, as tolerated, act to
affect pain perception.

Hypnosis is a technique studied to modulate the pain experience in MS. Hypnotic analgesia (Jensen,
2009, 2011), attempts to focus attention on a single stimuli, such as a voice to induce a relaxed state
and decrease the pain to unpleasantness, while altering the sensations of burning to a sensation of
warmth. The goal of hypnosis is to increase comfort and control over pain.

Guided imagery, breathing and progressive muscle relaxation techniques practiced regularly can be
utilized when there is a pain flare (Kratz, 2011). Audiotapes are available to assist in meditation,
mindfulness activities and relaxation..."

https://docs.google.com/viewer?a=v&q=ca ... z-lK1ZuQGw

The above link, albeit from the NMSS, is by far one of the best sources I've ever found regarding pain in MS. Cannabinoids (marijuana) are seriously discussed, and based on studies, is classified a Class B Medication.

Elsewhere, I've read that epsom salt baths are recommended as an easy, effective way to help ease pain from tight muscles--magnesium is absorbed through the skin. Jimmylegs can help you with serum target ranges (blood test values).
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Re: MS Hug information - updated 3/29/13

Postby lovebug » Sun Mar 31, 2013 11:45 am

Thank You `HappyPoet` for taking the time to help me out!!!! It is extremely appreciated more than you will ever no!!

I am currently enrolled in various classes at a Pain Clinic. I have been through the relaxation classes and yes it does help to some extent. Some of the things that you have mentioned are extremely difficult for me to handle physically due to the pain. My entire hands to my both arms are numb with pins and needles feeling 24-7. The MS Hug is also there 24 -7. I am currently trying to taper down from Lyrica to Topamax. This is from the request of my dr. at the Pain Clinic. I don`t think that Topamax will help much with the pain but I am going to try. I have tried Sativex and Cesamet in the past. No relief of pain! The only meds. I have to deal with the pain is Tramadol. I am seriously researching the Trigger Point injections and the Intercostal nerve blocks. I just have to find somebody that can do these procedures for me in Calgary, Alberta.

You seem to have acquired quite a bit of knowledge over the years on how to best handle your pain due to MS.
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Re: MS Hug information - updated 3/31/13

Postby HappyPoet » Sun Mar 31, 2013 5:22 pm

lovebug, as if a painful MS hug 24/7 isn't bad enough, you also have numbness and pins and needles in your arms and hands, you poor thing--I know how annoying and painful those symptoms can be!!

Keep trying to stick up for yourself and keep advocating for adequate "medically necessary" pain control. Docs just love to reduce our pain control meds, don't they? I don't think most neurologists understand MS nor know the difference between addiction and dependence. Plus, they're too frightened by the various governing licensing agencies to properly advocate for us which means that we have to jump through all their ridiculous hoops.

In the US, I also think doctors are being too eager to receive "bonuses" (or are they really kickbacks?) from HMO insurance companies for keeping costs low for those companies, and one way of doing that is by not offering referrals to expensive specialists. This is the reason, I believe, why my primary doctor never mentioned trigger point injections nor intercostal nerve blocks AND at the same time, did everything possible to keep my pain control med dosages low, too low for the level of my pain.

I've been learning the hard way, as my symptoms have been progressing. Thank goodness for the Internet! Knowledge is power, and now my MS Hug symptoms are bearable for me. There's still a lot I don't know, and if I've made any mistakes in the thread, I hope people will let me know.

You'll be in my thoughts, lovebug. If I can help you again, please let me know. :)
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Re: MS Hug information

Postby Azaeleaprawn » Sun Mar 31, 2013 11:02 pm

lovebug wrote:I went to a Pain management class today at a pain clinic and I started talking about finding out more information about block injections. Nobody had even heard of this yet!


I heard of block injections about 4 years ago at Pain management classes at our local pain clinic from an anaesthesiologist this was in Victoria BC where they did the procedures than and still do as far I know.
Aside from finding the muscle relaxants useful - Chinese acupuncture done by someone at the MS society proved helpful. All I can say is I sure feel for anyone suffering from it as when I had the stabbing pain it was sheer torture as well as frightening with the tightness and subsequent shortness of breath.
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Re: MS Hug information - updated 3/25/13

Postby HappyPoet » Mon Apr 01, 2013 8:09 am

Azaeleaprawn wrote:when I went emergency with left-side & middle back acute stabbing pain & a tight feeling around my chest which I said I thought might be an MS hug. - the doctor at emerg said he never heard of an MS hug ...and I thought WTF!
Gave me a muscle relaxant ( I have a sneaking suspicion he went and checked online for some help) and luckily it seemed to work over time - haven't had it again.

Oh Azaelea, Sooooo sorry I missed this! Your participation is very much welcome and appreciated. Sharing our experiences is extremely helpful to everyone who reads the thread.

There's something very wrong when neuros and ED docs have never heard of MS Hug symptoms, and it's left up to suffering patients to educate doctors. I think the problem begins in medical schools and continues through neuro residencies and into the research arena with clinical studies--mostly funded by big pharma--with a heavy research emphasis on DMD drugs rather than on research to help symptoms in areas such as nerve regeneration and better controlling spasticity and neurological pain. Just my opinion.

There are almost 20 edits to the first post because all the info/links in the post came from, in addition to my own experiences and knowledge, all kinds of sources from all over the Internet. Hopefully, some patients will direct their doctors to the post so those doctors can be better prepared for their next MS Hug patient.

I'm very glad muscle relaxers are helping you and that your horrible MS hug symptoms haven't returned. When I went to the ED for my horrible MS Hug attack, which made me feel like my torso was being sliced in half by a guillotine, those doctors didn't know what to do with me and thought they knew more about MS than I did. Having to deal with horrible MS attacks is bad enough, but having to deal with clueless doctors is just downright unfair. And because they don't understand MS well enough, they won't prescribe medically necessary pain control medications. Unconscionable. Stepping down off my soapbox now.

:)
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Tue Apr 02, 2013 5:14 pm

FINAL EDIT -
Thank you, George, for having shared time and tears with me.

timeless tears
like drops of rain
until the day
came higher April rays
and dried our tears
away.
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Re: MS Hug information - updated 4/2/13

Postby lovebug » Tue Apr 02, 2013 5:34 pm

Happypoet-I thought I should tell you what happened to me today. I saw my Neurologist for my yearly visit. He keeps me on my DMD. I wanted his opinions on trigger point injections and intercostal block injections for nerve pain for the MS HUG. He didn`t really seem to know much about either procedure and also told me that they are used mostly for Fibromyalgia. I was hoping he could help me out with these procedures. But I could sence that these were out of his league. That took me by surprise.

Anyways tomorrow I have an appt. with a Naturopath who does trigger point injections. Oh now this is going to be interesting.
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Re: MS Hug information - updated 4/2/13

Postby Azaeleaprawn » Tue Apr 02, 2013 10:11 pm

lovebug - I look forward to reading about your experiences with the triggerpoint injecyions

HappyPoet - that MS hug stuff can be hell all right. "Having to deal with horrible MS attacks is bad enough, but having to deal with clueless doctors is just downright unfair."
So true!!!!

Since my diagnosis a year and a half agp I've been without a PCP ( self inflicted because I refused to go back to my GP of 30 years who 3 years before my Dx said "no you don't" when I asked her if I had MS and she refused to talk anymore about it.

And the neuro who Dxd me is toast as well because at my diagnosis told me that he had suspected MS when he 1st saw me but didn't follow up with a brain scan and sort of shrugged when he said that and didn't offer anything.

So I go to the MS clinic once annually for my annual addition to their data base and not much more.
Everything that I know about MS has pretty much been self learned, no one offered resources or any concrete help other than the masses of literature from the MS society.

I now know to go to another hospital if I have any nad MS symptoms because that hospital has a neuro on staff - this gleaned from a nurse at the local MS clinic.

I finally found a GP just last week who seems energetic, compassionate with a bit of knowledge about MS so I'll see how this plays out - I'm so cynical now.
Other GPs that I interviewed in the last year were totally clueless about MS as well as some were uncaring and I didn't have the energy to train them.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Wed Apr 03, 2013 12:05 am

lovebug, looks like you'll be teaching your doctor about the injections. ;) I can't express how hopeful I am for you about them. I read (see below) that trigger point injections with Botox are relatively safe, so there are options for us which is good to know. :)

Thanks to you, lovebug and Azaelea, I just found VITALLY IMPORTANT information on Invasive Treatments for pain control. :)

EVERYONE,

Potentially LIFE-SAVING INFORMATION about the good, the bad, and the ugly is given at the above page which is filled with so much important information that a special post-script link will be added to the first post, which I know George would want.

Another link: The author discusses Opiod Medication and is as upset as I am that opiates aren't used more often, when appropriate.

True addiction of chronic pain patients is actually rare, I was surprised to learn, and our doctors need to learn this, too. Doctors must also learn that "dependence" is not addiction. There's no difference between being dependent on high blood-pressure medication and being dependent on medically required pain control medication.

Physicians, to be safe from prosecution, need only to perform due diligence in patient selection, keep proper patient documentation and records, see patients regularly, and follow best-practice guidelines and prescribing laws. If physicians can do these steps, there shouldn't be any problems with the regulating authorities. So no more excuses, doctors.

Last, I'm so surprised insurance companies, at least in NYS, aren't pushing more for pills than procedures. An $80,000 morphine pain pump costs considerably more than an $80 yearly supply of morphine pain pills. The first two pain mngt doctors I saw tried to sell me an equally pricey $80,000 electrical SCS device just as if they were trying to sell me a new car. While there is a place for the device to help some patients, I hope Obamacare might help change the overall backward and expensive philosophy of doctors pushing expensive, dangerous procedures before considering inexpensive oral opiates.

Azaelea wrote:Other GPs that I interviewed in the last year
Love your attitude about you interviewing the doctors! My fingers are crossed for you and your new doc to get off to a great start and for him to be an eager student. ;)

And the neuro who Dxd me is toast as well
Also love your sense of humor! But so sorry you had such crappy docs in the past, especially the one who diagnosed you. My 'time of diagnosis' was rocky, and with emotions high, I left my first neurologist and then my second neurologist, too. Seems too many doctors don't listen--actually listen--to their patients.
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Re: MS Hug information - updated 4/2/13

Postby Azaeleaprawn » Wed Apr 03, 2013 12:22 pm

HappyPoet wrote: Seems too many doctors don't listen--actually listen--to their patients.


Yes, isn't that the truth! "Listening skills" something that aren't taught properly in medical school, whereas, I think they should be a course all of their own.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Wed Apr 03, 2013 2:14 pm

lovebug and Azaelea, tomorrow I have a follow-up appt with my pain mngt doc. I've been known to blow off follow-up appts, but I'll be at this one because I have lots of questions. lovebug, I'm thinking of you and your appt.

Invasive Treatments wrote:SUMMARY: nerve blocks are never permanent and may result in worse pain: they should be reserved for patients with a terminal illness.
Regarding the Invasive Treatments article, I plan to ask my doctor about this comment which is ten years old; hopefully, things have changed for the better. More current sources, such as WebMD, don't carry this strong of a message, and I wonder what, if anything, has changed.

Am having pain and immobility from spasticity (tightness) and spasms (knotted muscles) in the intercostal muscles UNDER my left and right scapula which make moving, using, and raising my shoulders and arms difficult, so I'm hoping Botox, which can be given close to the spine (closer to the nerve root), might help these intercostals, most especially because it's IMPOSSIBLE to massage muscles that are UNDER bone.

Just found this image that shows the area of ribs under the scapula:

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