Having a Swell Time

Having a Swell Time

john connor

The thing about becoming increasingly immobile is that your consumption of TV, radio, podcasts, books and, indeed, anything written goes up immeasurably.

Luckily, one of the creative explosions in the recent years I’ve had MS is Scandi drama. I don’t know if it’s really penetrated the U.S. market, although its leading exponent, “The Killing,” was made into a U.S. show.

They are gritty, slow-paced, and character-led Scandinavian detective procedurals. My favorite is actually French and called “Spiral,” which I only mention to illustrate my perversity.

A trope of all of these shows is that the lead character will espouse, usually quite early on, that, “I don’t believe in coincidences.”

So, here’s one. I’ve had a urinary tract infection (UTI) since the end of last November. And even when the rest of my urine tests have been normal, my ketone levels have been off the charts. I’m not starving myself (I wish), and my glucose has been rock solid. My urologist doesn’t think I’m diabetic, and because I’m now a Lemtrada (alemtuzumab) patient, my blood gets tested monthly. If I had kidney or liver problems, a great big red flag would surely have been waived by my MS monitors. Of course, I could be an alcoholic, but I really don’t put the work in!

Then, yesterday, I tested my own urine. I’ve done it so many times now that I think I’m something of a dab hand (I thank you). My ketones were suddenly normal.

“I don’t believe in coincidences!”

What was different? The day before, I’d had my first-ever lymphatic drainage massage.

It was amazing. My legs, which have recently begun to impersonate the hindquarters of an elephant, had reduced to, I don’t know, a rhino’s. Still massive, but no longer so unwieldy.

After. (Photos courtesy of Cat Chamber)
Before.

The battle is on against edema. I also purchased massage boots. They blow up with air and squeeze the lower legs.

Edema has crept up on me — literally.

It started with slight swelling in my feet, but a bit of swimming or some wheelchair tennis dismissed the problem.

Then I started on Lemtrada, and everything slowed. I can walk around in the pool. But for the first time since I was 4, I have to be aware of drowning. Swimming was taken from me. Wheelchair tennis has now also gone. They may both come back as I recover from the effects of the treatment. In the meantime, edema crept up my body.

A few months ago, it was suddenly on my calves!

It’s a damn near perfect catch-22. The more it grows, the worse immobility gets. Then, the more it grows. A vicious circle.

So, why have I not done something about edema sooner?

Having MS is like fighting a world war. There’s the major battleground going on in my brain and spine. I concentrate on that, and resources/focus on other areas are dealt with “as” and “when.”

A second UTI front started early on, then trigeminal neuralgia erupted. It’s started again this week. If I really don’t believe in coincidences, maybe the new edema battlefront has also stirred this up. Edema, up to now, has been the least of my worries.

Brexit has thrown up WWII analogies all over the British political landscape; edema has, perhaps, been my Far East. It was only when the Japanese defeated Singapore so easily (the British never considered invasion from the jungles of Malaya, hence all their guns pointed out to sea) that anybody really noticed.

I’ve brought edema up with my general practitioner, my neurologist, and every MS nurse I talk to. None of them seem bothered by it. Maybe that’s why I’ve ignored it for so long!

Yes, I’ve got MS and read a lot about the subject, but in the end, I’m an amateur.

Until recently, that was, after all, the pinnacle of being British.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

67 comments

  1. Denice Hodgson says:

    I Also have MS (since 2003) and recently started having horrible edema. My feet and calves were awful. My doctor didn’t seem worried and I am not diabetic. However I was taking high doses of ibuprofen. When I reduced the dosage my legs returned to “normal”. I wish you the best and hope you can return to your activities soon!

    • Trudy McRoberts says:

      My legs have been doing the same for to many years. My MS doctor said it’s not caused from this. Lol really and no doctor does anything.

  2. Roberta Sloniker says:

    I have Primary Progress MS and have had issues with edema for about 3 years. Water pills helped for awhile but not much in the last 9 months. I elevate my feet often and put shoes soon after rising. I wear loafers or oxfords and that keeps my feet from swelling but my right swell quite a bit. I’m going to try soaking my feet in water and Epsom salts after reading about edema on line.

  3. Thanks, I love Scani Noir…It helps, however, a ritual exercise from 2 to 4 in the afternoon and feet raised at night help quite a lot. I have had no bladder infection for more than a year. I have started with MS in 1976. I have been using a wheelchair during waking hours since 2008. I have a good regime which means that I have read and adopted a few good diet ideas. I am a woman who used to cook. Find me on twitter, I am @standup4ms. I can stand now and transfer between seats; they had said it would be unlikely in 2008.

    • Debbie Rice says:

      Hi Laurence, have had MS since 1979! My dr. put me on a new medicine 3 yrs. ago called abagio & WOW, is fantastic has even reduced some of the damage from the MS!!!!! Give it a try, please!!!

      • Cindy says:

        Has it really reduced damage ? I am suppose to start this – please tell me when you started what the producer was etc ???

      • Brandie Dhuy - Bartee says:

        DEBBIE, IM SO HAPPY AUBAGIO WORKED FOR YOU. I HAD TO STOP IT AFTER 30 DAYS. MY BLOOD PRESSURE WAS EXTREMELY ELEVATED. BEFORE THAT I HAD THE SIDE AFFECTS FROM TECFIDERA. NOW I MAY BE STARTING TYSABRI. ILL SEE AFTER MY NEXT MRI IF ANYTHING WORKED FOR THE MOST PART. GREAT TO SEE YOUR STILL FIGHTING FOR SO MANY YEARS.

      • Sarah says:

        I have been on Aubagio for a year now, and need to return to Copaxone due to poor liver function on Aubagio.😕

    • Brandie Dhuy - Bartee says:

      GOD BLESS YOU. THANK YOU FOR SHARING. IM NEW TO THIS BUT IVE ALWAYS KNOWN THERE WAS SOMETHING UP. I THINK IM ALMOST AS OLD AS YOU’VE BEEN FIGHT THIS DISEASE AND IT GIVE ME HOPE.

  4. Dottie says:

    Soon after my diagnosis there was a time when my feet and lower calves swelled and my Ms specialist recommended that I start wearing compression socks. I have worn them for the last three years in my legs and feet have never swollen again 🙂 the problem is they’re quite expensive but you can buy them off Amazon for a reasonable price.

  5. Kelly Buffum says:

    Forgive me while I ignore the (important) issue you’ve brought to light and say what an enjoyable writer you are! Never had so much fun reading an article on edema! 😉

  6. Elaine Wilson says:

    Diagnosis with MS in 2004. Flare in 2007, loss vision and created innumerable lesions on my brain and spine. Thankfully vision returned!! Flare of 2012 discovered a “black hole” on my scan with a second developing. This journey is scary, sad and amazing all at the same time.
    Massage has always been part of my “treatment” and still remains so today. If you’re not having one regularly, consider it !! It helps in ways I can’t explain

  7. Amanda muro says:

    I’ve suffered from intermittent bouts of edema over the years mostly bc of medicine or diet or “ woman problems” and I also have MS and the edema does decrease mobility considerably, the Heat exasperates it as well. I’m fat lol, I’m sure that contributes as well, but again the catch 22 sometimes I just can’t exercise and the pain prevents me from losing weight.
    I think it all boils down to diet we r what we eat if I can’t exercise regularly I should be eating better removing certain things from my diet, but the depression of not being able to live a more normal life, well food becomes kind of a replacement. It’s such a diverse disease with no one person having exact same symptoms. Some in wheelchairs some not,
    Some succumb to it some fearlessly disobey its orders to stand down. I guess I’m that type I never followed orders anyway, why start now, the min I’m allow myself to actually believe I have this disastrous train wreck of a disease, the quicker I decline. So, I’m a massage therapist and though some days it hurts so bad, I just go to work and see that ppl with dibilitsting backaches prob have it worse than me. In regards to lymphatic massage YES! Keep doing that it’s prob the best thing to do for someone with MS, And it’s grest for wheelchair bound ppl as well, B-12 is also a very good way to maintain our ever so diminishing nervous systems, but the older we get, and the torturous chemo drugs they give us, zap our ability to absorb certain vital nutrients, and this goes undetected for years bf being lit up. So do yourself a favor my friend, and continue with the lymphatic massages, and go see abt getting b-12 injections and up your d3 it’s the only thing keeping me out of the wheelchair I think.
    And the biggest thing here, and it seems you have it, humor this is the bestest way to stay sane when nobody sees your pain and struggle bc it’s mostly invisible keep it light and use it as a form of medicine to battle the down days. It will keep u out of the dark places that are easy to fall into!
    Much love and luck my friend ❤️

  8. Kathrynf says:

    I used see to have horrible edema from inactivity and man did it hurt! I got an adjustable bed about a month ago. It has made a huge difference. There is a “zero gravity” setting I use or I put my feet slightly above my head. Some days I can even see a few veins in my feet! It helps me get to sleep faster and stay asleep. I am unable to turn myself over in bed so I can’t do much about my position after I’m all tucked in. Anyway I highly recommend it.
    Thanks for making me laugh I also try to use humor to get through this BS. What else can you do?

  9. Sally says:

    Have edema in my legs and feet. Hard to find shoes to wear. Looking for suggestions to prevent it from happening. Can walk a little and do some exercises from a chair. Walking has become more difficult lately and not sure what I could do about that. Would appreciate any suggestions.

      • Jane says:

        I was actually just thinking the same thing. Do it before you get out of bed! But when I saw your post, it gave me a start! My name is also Jane and I scrolled it just as I was thinking it!😁

      • Randy says:

        Yes – I wear acompression sock on my right leg. It does help.
        The disappointing thing is, I had to come up with this “solution” on my own.
        I had asked many doctors including a neurologist about the swelling. Nobody could give an answer for it.
        One day I saw my dad wearing compression socks and thought maybe it would help me. And it does 🙂

  10. T says:

    Besides compression socks, try wrapping your legs, starting at the the ankle, with an ace bandage, as though your leg was injured like an ankle, overnight. After a week or so, you should urinate out the excess fluid. Don’t wrap too tightly or you’ll wind up ripping it off make sure it’s snug, yet comfortable.

  11. Lisaann says:

    Hi.I have MS but it is my 13yr old daughter with the swelling in feet, ankle,legs. Bad. Can’t even get around a store & she’s crying showing me red swollen feet. Hands,arms,feet & legs numb & tingly. Couple times her leg or arm has gone completely numb. She’s suffered from migraines since she was 6yrs old. Many life threatening kidney infections as a toddler w/being incarcerated in the ICU & 1 of her kidneys scarred bad. We see a nephrologist regularly & that’s not causing her edema. She is not overweight.Went to 1 child neurologist – no clue but then again no testing for MS. And now the fatigue! She’s as blastardly fatigued as I was when I had mono in high school. But the edema is hurting her the worst. I feel so helpless, & worse so because I can’t get her any answers to get her any help. Red,red go away. Swelling come another day. Wish I may, wish I might, never see MS in her life.

    • Carol says:

      My heart goes out to you and your daughter. As parents, we try to do everything that we can, to ensure that our children are healthy. Like you, I hope that my daughter does not have MS. She just told me that she has had visual problems for the last 16 years. The next step is an MRI. I have had MS symptoms since I was 12 years old, but was not diagnosis correctly until I was 35. I would gladly take more MS symptoms, if this could spare my children. I do not wish this disease for anyone. I really hope that you can find the right doctor that can sort out your daughter’s health problems.

      • Lisaann says:

        I just saw your reply now as I have been battling my own health complications as well. Thank you so much for your kind words. I had to cancel her appoint at Children’s in Feb because I was still laid up at nursing home rehab (I had surgery on my back 1/4 & woke up unable to stand. Severe femoral nerve irritation/damage with A 100% quadricep deficiency. And now I’ve got the severe swelling! I am still trying to get her scheduled for another app & hopefully some answers.

    • Jenny says:

      Sounds a lot like my son… please check for Alpha-1 Antitrypsin Deficiency and abnormal C1 esterase. I am anxious to hear of your results.

      • Lisaann Czarnowski says:

        Wow. JENNY. I just looked up the above. Funny thing is,my liver values have been through the roof post surgical & have come down but never within normal limits.and it stated genetic. My mom just passed away but always had elevated liver enzymes. She had RA so it was contributed to her meds. Now I’m on a mission. I have screek shot the 2 tests so I won’t forget or lose a piece of paper. Thank you so much.

    • Lori says:

      Have you had a test done to check for blood clots? I was told they can check by taking a blood test. Definitely look into that. Keep insisting and fight until you find a Dr. to help her, poor girl.

  12. Maureen says:

    I also have suffered from edema for the last 2years on and off. I changed Physical therapist who is able to get me standing more and moving. The swelling has decreased back to normal. Continue what you are doing Good luck

  13. Emma says:

    My husband has SPMS and has been in a wheelchair since 2009. He’s a quad these days BUT the only thing that has improved to the point of cure is his hideously burning red, size14, elephant foot edema! He wears lambs wool boots 24/7 winter or summer and his feet are back to being pretty (for a man)

  14. Debbie says:

    I have MS and swelling in my legs & feet more in the right .Never even put MS and edema together, I try to forget I have MS [ haha who am I kidding].I was worried it might be the heart. I’ve been wearing leggings at night it seems to help. The compression socks but the ankles seem to get worst. My husband gets these bands from the wound specialist for his legs, at times I use them for my ankles with the leggings . Thanks everyone have the best day you can.

  15. Beverly says:

    The only thing I had been told Is to put on support hose ha ha with MS it is Impossible I have enough of the problem putting on regular socks I live alone as my husband passed away a few months ago so getting dressed is exhausting so I just buy bigger shoes and hope They don’t pop It would be nice if the doctors paid more attention to the problems we encounter and not just Poopoo them

  16. Jane Joiner says:

    You might research low dose naltrexone. Really good for M.S. I discovered Amantidine can cause edema. Edema went away after stopping that drug. Changing my diet has also helped my M.S. Low carb, cut out processed foods, little dairy cheese or sugar. No cokes. Makes a huge difference. We can heal our bodies with food or make ourselves sicker with the garbage we eat. It’s a choice we make.

  17. Ann C-J says:

    This also was my experience, and my GP put me on diuretics. But I insisted on blood work for thyroid, and allthough not startling, the results showed thyroid levels low. Been on levothyroxine for a number of years with an increase recently in the dose. Ceased diuretics. The water retentioon. swelling and pain subsided and after a few months and only rare during extreme heat and humidity.

  18. Jacki says:

    I have the same problem. I went to my doctor that sent me to PT that specializes in edema from cancer surgery. I wrapped my leg for weeks to get the swelling down in each leg. I had to order specialized compression hose that fit only me. It’s terrible expensive at $320 a pair every six months. I also have a lymphatic massage machine that fits over my legs and torso. Swimming takes it off pretty fast.

  19. Arlean Vauthier says:

    I don’t have M>S. but I have lympnedema due to many surgeries I have had. I have a lymphedeama pump (for both legs) which I us for on hour each day. It helps. Thia cannot be cured. You can only control it. Good luck.

  20. Nancy and Carl Froutz says:

    Thanks everyone for your input following this wonderful article. I thought my husband edema was due to his breaking his foot multiple times. (as we all know falling is a fact of life with MS) He is in a hospital bed and raises his feel all the time but still has swelling. Compression socks are so hard to get on that we skip it most of the time. (he has a size 15 shoe…ugggg) but thanks to all of your comments on here, I’m going to try a few other things. Good luck everyone with your quest of living with MS.

    • Karen says:

      I have edema quite a bit and one is usually worse than the other. I have a black hole at my odontoid process and it gives me all kinds of grief the last was a couple months ago with occipital neuralgia, they have me mobic, similar to ibuprofen but different enough, it helped the edema, didn’t help the pain or anything else. So it’s become a night time med, however, edema still comes just not as bad. Just a thought, might help you too, everyone’s different in what helps. I’m so glad to know other MS’ers do this too.

  21. barbie harris says:

    NO PROCESSED FOODS AND CUT SALT. MINE SWELLED BAD WHEN I STARTED ON ORAL MEDS FOR MS. CONTRACTED THREE STAPH/MRSA INFECTIONS IN A FEW MONTHS.

  22. Pauline Phelps says:

    I recommend reading the information on the Inclined Bed Theory web site. If we sleep ‘inclined’ rather than flat then the circulation of our blood and lymphatic fluid is improved. Therefore no swollen legs.

    • Sapidshelly says:

      This is miserable, I am so discouraged. It has been 3 years since I’ve had edema, it iso painful…whaaaaaaa. We are ready to buy an incline bed. We are guardians for my 10 years old ,(August), granddaughter. We have had her in our home for almost 7 years, trying to keep her In a safe environment.
      I’m 58 and it breaks my heart that I have to even consider forcing her to go back to that environment.
      Please, can anyone give me specifics on the incline bed they love, the name and where they bought it.
      I hate that I may have to put myself before this beautiful, fierce little girl, who has suffered more in 10 years than anyone should.
      ADVICE, PLEASE

  23. Linda says:

    Never had edema until….our vacation to Disney in Sept. 2017. We had one BIG day and took it easy the second day and the third day well suddenly my feet, ankles and up the calves a little bit were swollen ham hocks! I spent a lot of time with my legs up to try to get the swelling down and the fourth day it was better but not completely gone. Day 5 was more walking which in hindsight may not have been the best thing to do? When we got back home I spent time recovering (as I do after any trip) and with my legs up and it did go away eventually. After a bit of internet research I realized this could be caused from a heart problem to MS to just about anything in between. It wasn’t until I stumbled across this article that it all kinda made sense. Not a symptom I am looking forward to having recur in the future but I won’t be so freaked out next time

  24. Lloyd Fitzgerald says:

    My wife has RA and significant edema issues. Consider looking up May Thurman syndrome. (Spelling may not be right!). She had stents put in both iliac veins, (similar to what they do for coronary arteries), and has had significant improvement! Only I doctor within several hundred miles does this around us. It is an outpatient procedure with no side effects. It was diagnosed with an ultrasound of her iliac veins. Short version explanation is the iliac veins become compressed between the L5 vertebrae and the iliac artery, resulting in a reduced return venous flow, and then edema because of the reduced flow.

    • Joyce L says:

      Wow. I’m going through my first week of painful swelling. Thankfully only one foot. My ankles are usually swollen and I’ve learned to expect that but this week it’s my left foot and mercy me it hurts. I actually had an X-ray done just to be sure I didn’t break it and forget somehow. I was diagnosed with MS in 2014 and like many on this post had symptoms for years before. I hope this is just a temporary symptom and I can get back to normal soon.

  25. Lou prante says:

    I have had ms since I was 34. I’m now 62, only things I take are 5000 d3, evening primrose oil and calcium. Years ago I took Betasuron , I credit that drug for my good fortune with this disease. Used a walker and sometimes wheelchair before that. I have reactions to all of the newer drugs, can’t take. Good luck to all

  26. Believe it or not, my primary doctor was more helpful than my neurologist in fighting edema. He referred me to a Lymphodema Centers. They measure the swelling in my feet and have customized compression socks made for each foot. They also provide a lymphedema pump that quickly reduces the selling. You put each foot in a “sleeve” which fills up with air and massages your leg. There are many causes for edema, including multiple sclerosis and cancer. You don’t want the welling to get so bad that it causes your skin to break and tear.

  27. Julie says:

    My feet swell up all the time. I had no idea it could be MS related. Thanks for the article. Next time I see my neurologist I will mention the swelling to him.

  28. Laust Henssel says:

    Just a comment from Denmark.
    I had the same problem, but after I began taking LDN 5 months ago, the problem is reduced by 90%. I am not saying that it will help all, but it helped me.

  29. Sapidshelly says:

    Last time I had Edema this bad I was so desperate I went to my survival gear and took out my, Celery seeds and made a cup of tea.
    Celery seeds are in my survival kit because it is a natural diuretic.
    WOW, I really didn’t think it would do anything, but it drew the fluid out, I have not used it again because it worked to good and fluid imbalance scares me. I am going to go make a cup, I have suffered enough. I will update tomorrow.
    1 teaspoon Celery seeds, (not the growing seed), crushed per cup boiling water. Soak 10-20 minutes depending on how strong you want it.
    I am very sensitive to any med. so I am going to try 1/2 teaspoon for 10 minutes this time.

  30. Sapidshelly says:

    WOW, what a difference. If I didn’t have M.S. I could remember what worked in the past.
    After drinking celery seed tea last night I woke up with hope. The stuff is amazing. Just a little swollen today, a little I can take. I put 1/2 a cup of the tea in a bottle of ice water and have been sipping on it today, still no added swelling.

  31. Susan says:

    I think my Dr is checking me for Ms. I have this pain down my left leg. It’s horrible. I have swelling in my left leg calf and foot. My vision has been horrible for the past few years. I occasionally fall. I am diabetic. My bladder hasn’t worked in years. Dr sent me for an EMG that came back fine. But the Dr that did the test said he felt like the problem was in my spine. Now I’m waiting insurance approval for an MRI. I saw my Dr last week and all she said was to hang in there. I’m so frustrated.

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