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Readers Respond: What helps you deal with the "MS hug?"

Responses: 182


Updated October 12, 2008

Does this happen with any other illness?

Hello, I don't know if I have MS but my Dr has diagnosed an autoimmune condition based on the pain and fatigue I have been experiencing. Is the "MS Hug" only found with MS or other illnesses such as RA and Lupus? I have been experiencing what other posters have described for the past 6 months; worst of all in the mornings and easing up as I move and work during the day - provided I am not sitting or in one position for a significant amount of time. For me it is like wearing a corset 3 sizes too small; outwardly it doesn't look taut or firm and it feels as if my internal organs - liver in particular are pushing outwards. I have raised ESR and they are sending me to a rheumatologist.
—Guest Ka'El

exacerbation happening NOW

I was diagnosed with RRMS in 2009, after two flare-ups that included all kinds of weird lower body sensations. I've been on Copaxone since diagnosis, but haven't been consistently taking it since the end of the first year. Immediately following the diagnosis, I changed to a much healthier diet, including supplements. After moving out of my parents' house in 2009 (at age 23), I backslid into not-so-good eating habits and yada yada now I'm having the worst exacerbation to date. It started with increased numbness and odd feelings in my lower body that eventually translated into that hilariously named 'MS Hug.' At its worst I had difficulty breathing, feeling as if I was wearing a terrible corset that somehow extended to my thighs. After a visit to the ER ending in the mixed blessing of Percocet, I was scheduled for a 3-day round of 'roids a few weeks ago and put back on gabapentin. I saw a lot of improvement at first that has since leveled out. Symptoms are better but still here.
—Guest Patrice

Crushing Chest Pains

I am so glad to hear of other stories about the MS Hug. I had my 1st attack, it felt like a big snake was just squeezing my upper chest area, and the pain would radiate to my back, neck and jaw. I went to the ER and was admitted, had all kinds of heart tests and all of them came back perfect, they said my heart was extremely healthy and had no idea why it happened. Then about 2 months later it happened again, this time I was IN the hospital as a visitor, I walked myself over to the ER , said I had chest pains, and they swooped me away, gave me a EKG and said my heart was normal... took my blood, all was normal there too. Sent me home. Now that I am reading about this MS Hug, and reading all the descriptions, I now know that I have the MS Hug too. It is just a awful feeling. Mine would stay for 3 or 4 minutes and then subside, only to come back again, whole thing would last about 20 minutes or so. But you really do think you are having a heart attack.
—Guest Lori

Reflux and ms hug

I have been having a terrible time with reflux and trying to explain to the Gastro drs about MS hug. Does Anyone have both problems and how do you know which pain is from what.
—Guest Juju

MS Hug - Noting else found but MS

I have had symptoms of MS for 17 years, since 1994, diagnosed for 14 years, 1997. During this time I have had stomach problems, chest pain, shortness of breath, headaches, nausea, panic attacks, vertigo, blurred vision, extreme fatigue, weakness in legs and arms, tingling, numbness, pins and needles and all the other ms symptoms. I have had tests done to check out my gall bladder, appendix, for ovarian cancer, heart problems, ekgs, colonscopy, ct scans, camera down my throught to check my stomach lining, and more, all come back negative. I wanted to make sure there was nothing else going on. I have come to the conclusion everything is related to MS.
—Guest naneus

My experience with MS hug "Eagle Claw"

We are sittimg in hospital, waiting to be dismissed. Wanted to share my story, in hopes it will help someone else. It was difficult to put together what was going on. It took 5 doctors to get MS diagnoses. It took 4 this time in hospital. I started having a sharp pain that started in my back, radiated around to my groin. I figured kidney stone and prepared for the worst Took a toradol shot, went to doc gave me antiboitic. Took that for 5 days "nothing". after weekend from hell went to the hospital to check out for anything. CT Scans, Mri and final diagnosis is MS Flare. I would go urinate and have severe pain in my back. Felt like UA infection or stones. Symptoms broke after a two days in hospital. This was rough one of the most painful flares of my MS life. Hope this never happens again. Dilauden and muscle relaxers along with anti nausea medications got me through it. Hope this helps but my symptoms went away. Lasting conditions numbness for urge to urinate feel pressureonl
—Guest Leah

MS hug

Diagnosed with PPMS 7 years ago at age 60. To counter arm/hand numbness and feeling tight around chest I eventually increased my Vitamin D dosage to 12 capsules per day = 24,000 I.U. This dosage helped within one week after onset and I experienced reduced numbness and tickling on the skin of my arms and hands and NO tightness or MS hug around my chest. I am happy with results.

The "HUG"

It's almost always there for me! I am lucky there is not much pain but a constant pressure around my midsection.
—Guest Marc

MS Hug

Hello. Has anyone else found this symptom linked to hunger? I find if I keep my belly full- the hugs stay away. It's hard to keep my belly full but worth it.

to:guest, Joanna re:overweight

I agree 1000% with the fact docs see the 'fat', and do not take anything you say seriously. I developed a 40# tumor and was blown off for almost 3 years!! No, the MS hug does NOT have anything to do with your weight. The first time I had it happen was 4 years before I was diagnosed. It was so severe, I couldn't breath, passed out walking into the Emergency Room. They had me on a ventilator for 2 days. All my tests came back negative and it was a huge mystery! 10 years later, I was told the chest tightness was a "MS Hug'. It explained what I had been experiancing for 10+ years. I deal with it by clenching my teeth and just putting up with it until it passes. Cold, heat, change in position, nothing seems to help. Anti-spasmodics? not sure if they help.
—Guest Sallie Mae

End of the "hug"

Since having the CCSVI procedure 10 months ago, my wife's MS hug has disappeared - as have all her other MS symptoms.

MS Hug

I was diagnosed in 81 and have experienced the "MS Hug" many times.. I had ruled out just about everything and finally concluded that it was a lack of water. That's right..think about it...happens when it is hot and we are in the sun....happens when we don't drink enough water and are dehydrated. If you are couting coffee and soda pop...stop as and they dehydrate YOU. Whenever I get the "hug," I immediately drink a 16 oz bottle of water & it is gone. Try this out! Always ask yourself...how mch water have I drank today..... keep trank as your meds. They work better when you drink lots of water. If you tire of just water, flavor it with koolaid, jello, lemons or limes. It really does work! Don't hesitate to email me to let me know if this works out for you as it's all true.
—Guest WW

MS Hug

I was diagnosed in 2007 with PPMS. Since then I have had colonoscopy, endoscopy, nuclear test for gallbladder, CT scam of all major organs from chest down, etc., etc., all come back normal. Which is a blessing. I finally figured out that the pain I experience constantly is the "Hug". The only thing that helps is pain med's and rest. Although laying down is uncomfortable because then I get spasms in my legs and lower back. My hands are also numb along with my legs all the time.
—Guest Cathy

MS Hug

Low Dose Naltrexone rid me of MS Hug which I'd had for 1.5 yrs. It also reduced the spasticity in my legs. It's infinitely less harsh (physically & mentally) than the drugs mentioned above. Cheaper too.

Valued info and tips!

Thank you for the detailed information and practical suggestions for dealing with this symptom.
—Guest Thriving With MS
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