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so I was diagnosed by a neurologist in 2014 and have gone from bed bound to functioning in a limited way and back to bed bound several times.
Prior to 2014 my blood pressure was in the normal bracket, it's now 140/88 at best and goes up higher at times. GP doesn't think I need meds for it. I don't drink or smoke, eat fatty food or have anything with caffeine in. I practice good sleep hygiene.
GP thinks if I exercised more my blood pressure would go down. That's all very well but some days showering leaves me exhausted let alone anything else.
It worries me that all this resting is damaging my heart. Does anyone else worry about this too? Does anyone else have high blood pressure that started the same time as the CFS?
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guess it's catch 22 but, you can only do what you can do. my Physio said that going to the swimming baths and exercising in the water is good to start moving a bit more. Not swimming until you're in a position to do so. It's a slow road to get there I think.
I know I'm not as physically fit as I'd like to be and have to rest often. Again , physio said work on core muscles gently and start to include yoga/pilates moves. Only a couple or you end up with payback.
I'm taking feroglobin at present to help myself and it may help you?
I do worry that my muscles, including my heart are wasting away. I literally have no strength anymore.
i will start with some easy stretches and see how I go. My nearest pool is 9 miles away so a bit of a misson but maybe I should make the effort and give swimming a go...... perhaps just a width to start with 🏊
The physio advised me not to swim yet as when I managed a swim in summer I had payback for 10 days. so, it really is just a case of doing some simple movement in the water till you are more able. I was really shocked how bad my payback was as I stretched well and took breaks and was only in the water about 20 minutes.
Like you and Lisa, I was active and liked to walk at least 30 miles a week. I think that is the hardest part, being so active and very independent and then struggling to lift a pan or hang out the washing!
With the yoga, gently does it, just a couple of moves. I did try a class and it was a very gentle class and I just didn't do some positions due to a back issue I now have. sometimes I would feel really ill but, I think I felt better after. think that was about 3 years ago now though. I had to stop going and only recently managed to start seeing a physio about pain and it was here they told me to strengthen my core and not be swimming yet as too big a jump. same with the yoga, small steps.
Hey Sarah. I've been sick for about 17 months. I have problems with my blood pressure too but on the opposite side. Mine is usually too low- about 94/60. So I have to drink salt water in the morning otherwise I'm too lightheaded.
I'm scared about my heart too. I was very active before I got sick and now I'm lucky to make it through the grocery store. My muscles are dying to be worked. But if I try I'll get sick within a few days and crash for weeks. It's super frustrating. I have found that I can stretch though. And that does help a bit.
thank you for your reply.
My daughter suggested yoga but I know I won't manage a class. I too was active before all this, my days off work involved 25 mile bike rides and 10 mile hikes along the cliff paths. These days hanging out the washing kills my arms!
I shall check out You Tube for a simply yoga exercise and see if that helps.
I did yoga consistently for 4 years before getting sick. I cannot do it now. I tried just some basic stuff and it was too much. But doing the stretches (not poses) seems manageable and helps ease my stiff muscles. I hate being inactive. It's the worst part of this whole thing. Inside I'm dying to do things. While my body is fatigued, my mind has not been affected. So I'm not sleepy.
I'm so sorry you've been sick for so long!! Has it gotten better or worse over time? Or just sort of stayed the same? I was acutely sick for the first three months. Completely bedridden. I'm not that bad now but still feel pretty sick all the time.
Hi Lisa, I typed a reply last night but can't see it. Either I didn't press post reply or I'm repeating myself for which I apologise.
I started off being bed ridden for months then gradually was able to function at about 60%. This enabled me to work for up to four hours a day in the craft shop I own with my daughter. My contribution to the shop was sitting at the till and some printing which again I did whilst sitting. Then almost overnight I was struggling to even shower and ended up in bed for days at a time. That's how it has gone on, 60% weeks followed by bed weeks or as we call them 'NO' weeks. Yesterday was a 'NO' day, I cancelled seeing a friend (shop is closed Sunday and Monday) and stayed in bed. This morning (just after 8am in the UK) I'm feeling considerable better than yesterday and will be getting up today although my daughter has said she'll manage on her own unless I feel up to coming in. We'll see how I am after showering etc 😁.
A craft shop? That sounds so lovely! And I'm glad you have some flexibility. I'm dying to get back to work (I'm an actor) but its too much right now. I actually put a post out looking for part time work I can do from home.
A friend of mine recently told me she had CFS in her 20's. It lasted 3 years then poof! Went away. Thats giving me some hope. That and a drug company here in the states think they have found a cure for it. It's in phase 2 of clinical trials! Gotta keep hoping.
A cure would be amazing wouldn't it, I don't like taking drugs but I would if it meant getting better. 😁.
I think also these forums whilst incredibly informative, reassuring and supportive are full of folk who aren't getting better and are looking for help. All the people who had CFS/ME for a short time and are now well don't come on here which leads us to believe it's never going to get better and in many cases it does.
Looking forward to that cure. 😉
I love the 'NO' days, that's a good one. I have a scale of 1-10 so if i say im at a 10 then its really bad. On a good day I sit at a 3/4.
I've found i have low blood pressure & during the start i kept having bad dizzy spells. I'm supposed to add salt to my food but i dont like the taste so add it to meals while im cooking.
I miss exercising. My boyfriend & i would go beach walking on sundays for miles but by monday i was worn out by the time i got to work. There are days when i force myself to walk just round the block (about 5 minutes) just to get some fresh air but i need my stick to do this.
I found a yoga channel on youtube called Yogamazing. I try to do one position a day, depending on what scale im at. Stretching does help, especially as i have leg spasms. I just get fed up of being out of breath by the smallest activities i do.
Hope today is a 'YES' day.
Hi Caroline! I have low blood pressure from this too! I have to drink salt water in the morning. Strangest illness ever.
I rate my days on the calender using a G (good), M (medium)+, M, M-, B (bad) rating system. Most days are a M. And and N would be a normal day, presickness. Still waiting on that one!
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