Swelling feet and ankles

[CMT2012]

I have CMT1a ~ Does anyone suffer from swollen feet and ankles? Diuretics don't help. They are usually bearable but occasionally become quite painful and I have to elevate my legs for a few hours to get any relief. They soon return and it is now a chronic condition with which I am learning to live. Any ideas or even just knowing I am not the only one would be helpful. Thanks!

[snowmancarnage]

Hi, I have CMT1a as well and my feet, especially my right foot is badly swollen. In fact it is hard getting on my orthoses.I seem to have a lack of feeling, but sometimes it feels like my right foot is sprained. Mine have been like this for quite some time now. Im not really sure what to suggest.

[CMT2012 in reply to snowmancarnage]

Thanks for your response, snowmancarnage. Hmmmnnn... if it is only your right foot, you might want to get checked for DVT. I know that, when my sister had DVT, it was only one foot and her toes disappeared because her foot was so swollen. Now that I know, when someone mentions it is only one foot, the red flag goes up and I have to suggest to them to get checked for DVT. When my feet and ankles swell, it is both of them... I have had one swell more than the other by a bit, but it is both. Thank you again for your response. Hopefully, someone will have tackled this and will be able to suggest a remedy or give an idea of something I may have overlooked. Kind regards ~ Jean

[CMT1111 in reply to snowmancarnage]

It sounds like you have severe early onset cmt hereditary neuropathy 5x. Get a Gene test

[PhilC]

I have CMT1a and frequently suffer swollen feet and ankles particularly if UI have either been standing for long period or walking on uneven ground where the ankle gets twisted.

I have tried supportive insoles in my shoes and various other things to little effect,

The best solution I have found is simply put your feet up, raising the feet allows the fluid in the feet to drain away. If finances allow my other tip is to have a massage as this not only disapates the fluid also stretches the muscles and tendons, I alwayswalk better for days afterwards.

[CMT2012 in reply to PhilC]

Thanks for your response PhilC. I do put my feet up but, to be honest, I hate to take the time away from my other activities such as artwork, etc. I don't leave the house except for medical appointments because my immunity is shot and I catch whatever bug seems to be making the rounds.

Has anyone tried those circulatory devices where you place your feet on a device and it encourages circulation in your feet and lower legs? I don't know if this is helpful or not for the swelling but, if it is, I'd give it a go.

It's a wheel I'd like to get off of if possible. You know, the one where your physio tells you to walk more, your GP tells you to put your feet up and your stuck because to walk very far at all is exhausting and putting your feet up steals your day away...

I will continue to succumb and put my feet up when it gets to be too much until some other wonderful way to accomplish this is found.

Thanks again for your response, PhilC. I will definitely continue with putting my feet up. If I hear of any other way to do this, I'll let you know. Kind regards ~ Jean

[Blueberry5 in reply to CMT2012]

I currently have lyphedema. Along with compression socks I'm using Circu Flow for two hours a day. I have a great Occupational Therapist who specializes in the condition.

[PhilC]

Hi, No those devices don't work if you have CMT as it requires the nerves to participate which our rarely do lol. Have to tried flight socks to help keep the swelling to a minimum? They do work but can get uncomfortable towards the end of the day. Keep battling on.

[CMT2012 in reply to PhilC]

Hi PhilC... I can't get flight socks to fit. I had big calves to begin with... it runs in our family and I was very fit as a youngster, ballet and tap, running cross country, riding horses and bicycles, swimming, etc. Thanks for the thought, though. I will definitely keep battling on. If I find something that does work, I'll certainly share it here. Thanks again PhilC. ~ Kind regards ~ Jean

[John1945]

Hello CMT2012.....

Most sufferers of C.M.T. have varying degrees of swelling in their feet,and ankles:

Your are correct in saying that diuretics do not work, they mainly reduce the load on your lungs and kidneys by, expelling fluid from your body for a period of 6-8 hours after taking them: I have been taking them daily, as part of my control medication for BP/Hypertension since 2006:

CMT is the most frustrating of diseases !

EXERCISE and you end up with FATIGUE ?

DON'T EXERCISE and your muscles control gets FLOPPY ?

I believe that you must ELEVATE your feet/ankles for a reasonable period (say watching TV in the evening) : I purchased a chair which has a a platform that lifts your lower limbs UP ! to a level position, thus eliminating the normal "hanging-down" of your lower limbs:

Get your G.P.to check the pulse in your foot, to check your circulation :

ALWAYS REMEMBER ! KEEP A MOST POSITIVE PRO-ACTIVE ATTITUDE TO FIGHT THIS DISEASE ;

SORRY C.M.T. BUT YOU ARE NOT GOING TO BEAT ME ! ! !

[CMT2012 in reply to John1945]

Hi John1945! Thank you for your upbeat and encouraging response! I definitely have CMT in my sites to defeat!

It is extremely frustrating! I don't think my physio really knows what is happening as she is always expecting me to improve and get better. I finally told her that without treatment or a cure, it isn't about getting better. It is about maintaining for as long as possible.

To be honest, I think my body is in shock. I have used a wheelchair since last August for long distances. Before that, I had to walk long corridors in an NHS hospital and I had so many illnesses in the course of 6 months... I think due to exhaustion and stress. I was a senior manager in an NHS FT hospital. I returned to work in a wheelchair because I just couldn't keep walking those corridors. Since then, I think my body has just been in shock and recovering. I don't eat a lot but my body is gaining weight and it seems like my whole body is dealing with inflammation issues. Does this sound right? I wonder because my consultants ask if I've always been this 'size.' I haven't always been but over the last nine years, my body has been reacting to whatever has been going on. I was only diagnosed with CMT in July of 2012. I think a lot of what has been happening to me physically is linked to this but no one can say it is with certainty. It is frustrating!!!

I WILL NOT LET THIS BEAT ME! I AM DETERMINED TO HEAL! I AM DETERMINED TO SILENCE THIS GENE AND BEAT IT! I WILL FIND A WAY! When I do, I'll let you know!

Thanks again, John for the encouragement! Kind regards ~ Jean

[PhilC]

Jean,

i know what you mean about hospital corridors lol I sell equipment or at least try to in NHS Hospitals ! I cannot tell you how many surgeons have commented on my odd gait, I used to explain about the CMT but most haven't heard of it...like most G.P's come to think of it.

It is a Catch 22, I know if I do to much I am totally exhausted for 48 hours and my glutus maximus ache quite badly. Hey ho they will cure CMT one day, hopefully soon. Philip

[CMT2012 in reply to PhilC]

Yes, a cure would be lovely. Until then, I will try to heal myself. If the physicians can't do it and the science isn't there yet, I will have to rely on my will being stronger than this one duplicated gene!!! Where there's a will, there is a way! Thanks Philip! Kind regards ~ Jean

[Whiterose]

Hi yes I too suffer from swollen feet and ankles. My G.P prescribed compression stockings which really does help. Don't be surprised if you do get a prescription and the chemist asks you to take measurments they will tell you how and when to do this.I also have Lymphatic drainage, it is great and even for a short time can see what my feet and ankles look like!. I can recommend the Red Heart Fund in Boscombe, Bournemouth for this treatment Tel: [phone]

[CMT2012 in reply to Whiterose]

Hi Whiterose, Thank you for your response. I am so glad that you are finding these things helpful for you. I have been unable to find compression stockings to fit my legs. I have thought of Lymphatic drainage. I'll have to look into it to see if there is anyone local to me and the costs associated with it. Thank you, again, for your generous response! Kind regards ~ Jean

[Whiterose]

Jean, the compresssion stockings can be made to fit your legs. I urge you to chat to your G.P about this. Don't give up. Kind regards. Terese..

[CMT2012 in reply to Whiterose]

Thanks Terese. I didn't know that. I think I was thinking the one-size fits all stockings you get for flights and things. I'll definitely talk with my GP. Thanks again! Best regards ~ Jean

[strawberryshortcake]

hi.I've found that one water tablet a day plus a couple of tablespoons of apple cider vinigar with a spoonful of honey and fruit juice works with my swollen feet and ankles.one doesn't seem to work without the other but together i don't get hardly any swelling at all even when the weather is warm.

[CMT2012 in reply to strawberryshortcake]

Thanks for letting me know about this, strawberryshortcake! That remedy sounds yummy! Best regards ~ Jean

[claire_marsden1]

hi i had a problem with swelling on both feet and ankles orthotics give me some medie stockings n they are awesome took some getting used to but have worked great hun x

[CMT2012 in reply to claire_marsden1]

Thanks Claire! I will be seeing my doctor in September and will ask about compression bandages because I've never found a stocking to fit. I'll let everyone know how I get on and if anything is working. Best regards ~ Jean

[Jud61]

Me me me. My mum with cmt also had the same problem for years and when she became confined to a wheelchair all the time the problem got unmanageable and she sometimes had to cut her trousers to get them off. I am so fearful I will be going the same road. Sorry I'm no help but just wanted to say you are not alone. x