I went to the flea market and was there about 3 hrs. well I spent 3 days in the bed getting over it. But I aslo have severe swelling in my feet, legs, and hands, I also have osteo arthritis. I had to go to the ER they gave me water pills. I have to my doctor doday becuse it is not better. Does anyone know what the swelling coulld be from. My hands are so swollen they tingle.
cat
CFS can cause swelling of hands and feet… Ive had that happen myself just due to the CFS. (of cause many other things also can cause swelling).
For myself, the swelling goes when my CFS symptoms improved some (sometimes the swelling has lasted weeks)… or when my symptoms shift to another lot.
For a comprehenisve list of CFS symptoms (you will see swelling listed here too)
http://www.talkaboutsupport.com/group/alt.med.cfs.open/messages/2799.html
I suggest to note to yourself that you really over did things by doing that 3 hrs of activity without rest, so aim to do less than that so you dont start crashing, how can you hope to heal and recover from this if you keep on wiping yourself out.
Work out what you can do without worsening things and stop just before you get to that point. Repeatively over stepping your limits could really end up setting you back big time. Ive heard of some doing permanent harm to themselves with that.I went to the Doc today. The swelling is too much. They are not sure what is causing it. I can tell the diffrence from swelling from the CF and Fibro. This is terriable swelling. I have to go back on Friday. I am to stay in bed with my feet up higer that my heart. They increased my fluid pills.
oh really sorry to hear that cat (((hugs))), that does sound bad and more than any normal CFS swelling.
I hope your heart hasnt been affected and is okay.
swelling all better now Deb?
You arent making your condition worst by exercise are you??? I know your doctor has told you to keep moving to avoid getting weak, but its the CFS itself which often makes us weak… as long as we are moving about some we shouldnt loose all our muscle tone. Im not quite as strong as I once was (I used to be very strong and athletic)… but I still are fairly strong if the CFS isnt playing up.
Much bedrest certainly doesnt do most of us any harm at all… if anything it helps the CFS which then gives us a better chance of doing more. It is basically a myth that we are going to go wasting away cause of lack of exercise, it is a fact that CFSers are often harmed by exercise. Your doctor may not realise this.
All the exercise I do is walk to the bathroom, to feed my pets, and cook simple meals. I haven’t the strength to walk much else. Went to Dr. and store and went down 5 lsles and that was it. I had to lay down for 2 hours. I still am having weak spells, espically in my legs now. Im still swelling but not as much but the fever and burning return several times a day and all night long. I have lost a lot a sleep now which I know does’t help. One of the Dr. I see said I have to watch for blood clots in my legs because they swell around the knees and lower thighs. The left ankle and foot swell really bad sometimes too. Thats when I think she worries about clots. Since this last flareup from Jan til now, my leg muscles are very weak now. I have to go up 4 stairs into my house and I lose strength on the third step and have to pull myself in with my arms. Last flare up in Sept/Oct. I could barely use my hands and arms. I could barely climb into and out of my car. Going to the restroom was major work, I could not lift my arms over my head. As far as my Drs. go, I have Kaiser in Riverside CA. They say that I am seeing the best Drs who know about these conditions,just I am worst than most they have seen. Rh. Dr. states I’m severe and he only has three patients worst then me. But I have found B6 does help with the swelling some. Try it. Our Health Care Service really has no answers for me but to seek God to get me thru this. They really have no clue what to do for me.
“Dr. states I’m severe and he only has three patients worst then me.”
You are actually not too bad for a CFSer (thou I know it wouldnt be feeling like that!!!). 25% of CFSers are housebound or homebound… so not many doctors get to see severe cases, when in fact severe CFS is quite common and not unusual at all. I have a few CFS friends, who hardly ever are even well enough to sit and get online at all and never are able to leave the house. Nearly all of those in the 25% group online are like that.
Exercise is anything in which one is moving… to a CFSer just walking out of the house may be intense exercise and may be too much.
((((hugs)))) it sounds as if you are really having a tough time with it right now.
“But I have found B6 does help with the swelling some. Try it.”
My CFS specialist has me already on activated B6. You could find that folic and B12 could be a help too.
What I do when bad is only grab less than the 10 shopping items at a time, so I can go throu the express checkouts and be in and out of the shop fast as I would of been unable to stand in the normal shopping lineup…
It’s only in the past 6 weeks, that Ive been up to being able to get all my shopping in one go again. At some shopping centres, it can be arranged for them to get your shopping for you and then deliver it. My local shopping centre does that.
…
I think the following CFS/ME disability scale is the best one Ive come across, there are other sections too for cognitive and over all… as some CFSers have more trouble with their brains, while others have more trouble with the physical. Im currently at about 50-60% on that scale so moving into the moderate range again (back out from the severe range)…
"Part 1. The M.E. Physical Ability Scale
A Hummingbirds Guide to ME’s
3 Part M.E. Ability & Severity Scale:
Part 1 – Physical Ability Scale
Compiled by Jodi Bassett, 2005. Taken from www.ahummingbirdsguide.com
FULLY RECOVERED
100%
An unrestricted (pre-illness) level of physical activity is possible.
VIRTUALLY RECOVERED
95%
A high level of physical activity is possible, around 95% of pre-illness capabilities. Able to cope physically with full-time study or work without difficulty, plus enjoy a full and active social life.
MILDLY AFFECTED
90%
A high level of physical activity is possible, around 85 - 95% of expected. Minimal restrictions apply for activities involving exertion only. Able to work full time with difficulty in jobs requiring exertion.
80%
Physical activity is at around 70 - 80% of expected, a daily activity limit is clearly noted. Unable to work full-time in jobs requiring physical exertion, but able to work full-time in lighter activities if hours are flexible. Social activities requiring physical exertion may be difficult.
MODERATELY AFFECTED
70%
Physical activity is at around 50 - 60% of expected. Unable to perform strenuous tasks without difficulty, but able to work part-time in light activities or deskwork for 5 – 7 hours a day, although rest periods are required. Physical abilities degenerate significantly with sustained exertion.
60%
Physical activity is at around 40 - 50% of expected. Unable to perform strenuous tasks, but able to work part-time in light activities or deskwork for 4 - 5 hours a day if requirements for quiet and resting are met. Physical abilities degenerate significantly with sustained exertion. Physically undemanding social activities are possible.
MODERATE TO SEVERELY AFFECTED
50%
Overall activity level reduced to around 30% of expected. May be unable to walk without support much beyond 100/200m, a walking stick or wheelchair may be used to travel longer distances. Several hours of deskwork may be possible each day if requirements for quiet and resting are met. Physically undemanding social activities are possible.
40%
Overall physical activity level reduced to around 20% of expected. Not confined to the house but may be unable to walk without support, much beyond 50/100m, a wheelchair may be used to travel longer distances. Requires 3 or 4 regular rest periods during the day, only one ‘large’ activity possible per day usually requiring a day or more of rest in-between.
SEVERELY AFFECTED
30%
Overall physical activity level reduced to around 10% of expected. Usually confined to the house but may occasionally (and with a significant recovery period) be able to take a short wheelchair ride or walk, or be taken to see a doctor. Most of the day needs to be spent resting except for a period of several hours interspersed throughout the day when small tasks may be completed (or one larger one). Activity is mostly restricted to managing the tasks of daily living and some assistance with or modification of tasks is often required.
20%
Overall physical activity level reduced to around 5% of expected. Usually confined to the house but may very occasionally (with a recovery period of a week or more) be able to take a short wheelchair ride or walk, or be taken to see a doctor. Bedbound or couch-bound for 21+ hours a day. Activity is restricted almost exclusively to managing the tasks of daily living and some assistance with or modification of tasks is necessary.
VERY SEVERELY AFFECTED
10%
Overall physical activity level severely reduced. No travel outside the house is possible. Bedbound the majority of the day (22+ hours) but may (with difficulty and an exacerbation of symptoms) be able to sit up, walk or be pushed in a wheelchair for short periods/distances interspersed throughout the day (to the bathroom or to travel from room to room). Almost all tasks of daily living need to be done by others and/or heavily modified. Eating may be very difficult.
5%
Overall physical activity level very severely reduced. No travel outside the house is possible. Close to completely bedbound (lying flat in bed 23.5+ hours a day). May sometimes (with difficulty and with an exacerbation of symptoms) be able to sit up, walk or be pushed in a wheelchair for very short periods/distances interspersed throughout the day (to the bathroom or to travel from room to room). All tasks of daily living need to be done by others and/or very heavily modified. Eating and drinking may be very difficult.
EXTREMELY SEVERELY AFFECTED
1%
Completely bedbound and may be unable to turn or move in bed (or at all) unassisted. Eating is extremely difficult and liquid food may be necessary (little and often). Swallowing liquids may also be difficult or impossible and in some cases nasal-feeding tubes may be required. Unable to care for oneself at all. Bed-baths (and other personal care tasks) undertaken by a carer or family member may cause severe relapses in symptoms and so only be able to be attempted occasionally."
Take care…
Hi there,
I see that youve been talking about exercises and reduced mobility. I dont know if your doctor have specified any exercises to you, but there are some very simply gentel exercises to use regularly to both strech and strengthen the muscles. Regular exercise helped me. I can appreciate that your condition is more severe than mine but perhaps a little gentle exercise will help. You have to remember that without exercise muscles tend to waste away and reduce mobility even more. Exercise also helps promote increases bone density aswell. To begin with the exercises may be very difficult but over time your muscles should become stronger and supple allowing to do more and increasing your mobiltiy.
Hope you feel better soon.
Michelle