Does any one else have POTS aswell as cfs/me?
Posted , 4 users are following.
It’s been suggested by my OT over the phone a few days ago I may also have POTS - just to add in the mix of severe cfs/me too. I’ve been suffering a major relapse the last few months & knew something felt different. Although it’s yet to be confirmed as need the relevant tests. Ironically I’m too ill to see the GP. I tick all the boxes with symptoms & does seem to make sense. I was feeling hopeful that with the right treatment I could get back on my feet again & improve all symptoms overall. Although on doing research it seems there are no proven medications that can help. Can anyone shed any light & give me hope?
0 likes, 8 replies
charlie19 pet48859
Posted
Last yr about 4mnts in to my illness I developed palpitations...and they thought initially it was POTS...but although I still suffer badly from chest pains the racing heart thing has more or less subsided.
I realise this is slightly off what u were after, however I am always interested in how people classify their CFS. You say yours are severe. Do you mind elaborating what that means for you? I am always at a loss how to classify mine. I know they are not severe...I would say moderate. I dont leave the house much. On a decent day I can do say 5 min walks from the house. Having said that I can rack up say 7000 steps just at home each day. We have a large verandah which I pace up and down like a caged animal. At present my worst symptoms are sore weak crampy legs with off and on numbness. Similar symptoms in my hands and arms. Fatigue is always present but I am able to function around the house without a lie down between say 1030 to 1030 most days. I do sit a lot though.
pet48859 charlie19
Posted
I will need testing for POTS to conform diagnoses, once I’m well enough to see GP. In terms of the cfs/me. I can rarely leave the house (when I do it takes a lot of forward planning & pacing & only short for dentist, GP etc) if I go to family or friends I rest with half hour of getting there & in-between courses if were eating (rest is an hour or more at a time) I’ve been in a relapse the last 8 weeks & not left the house at all mostly bed or sofa bound . It’s taking me all my effort just to get to the bathroom or downstairs to eat. I can’t stand for more than a minute before legs want to collapse. So much more but my brain fog won’t let me think, my brain or wired. You do well to walk every day. Last year I I tried walking for 1 minute in my garden every day, it didn’t last long before I relapsed 😳It's been 11 years for me, it started mild, then over tome progressed to moderate then severe.
elaine62759 pet48859
Posted
Not sure what age you are or if this might affect you but a lot of the symptoms of POTS are also similar to those you can get with the perimenopause which can start to affect you years before the actual menopause. They are also similar to those of ME/CFS. I'd recommend trying to see your GP for more up to date blood tests and an examination if you feel like your symptoms have changed so you know what you are dealing with then you can do more research into it. If you are unable to go to the doctors could they do a home visit instead?
I've had ME/CFS for over 20 years and know how this normally makes me feel but in my mid 40s I started to feel like my symptoms were getting worse for no apparent reason with much more dizziness, balance problems, anxiety, exhaustion, muscle pain and brain fog. None of my usual coping strategies were working so I went to the doctors and they found my hormone levels were dropping indicating the start of the menopause. It's been a constant battle ever since to try and regain some of the energy I had before. It's so frustrating as I'm managed to get from severe ME/CFS to moderate with pacing, gradually increasing activity, relaxation and diet but feel like I've gone back in time and am having to start from scratch again to try and improve my health.
Life is a constant battle but don't give up hope as if you felt better in the past there might be something you can do to improve things. Good luck!
pet48859 elaine62759
Posted
Thanks for this Elaine. I think you have a very valid point & hormone check is on my list of what I’d like checking when I get my bloods done. I am 49 & know things are changing (I went 7 months without having a monthly then had 2 close together so know somethings going on) I’m a little overwhelmed at the minute & can’t get my head around how to go about getting help. I think I’ll call docs tomorrow & see if he’ll call me back & see what he recommends, a home visit or nurse come to take bloods etc.. Oh the joys of being a woman hey?!
elaine62759 pet48859
Posted
The fact you were saying that 'something felt different' made me think it could possible be your hormones as that's how I felt when my hormones first started to drop but I just didn't know that's what was causing the additional symptoms until I had the blood test results. If something shows up at least you'll know what you're dealing with and might need to try changing your diet or additional supplements. Make sure you get plenty of magnesium as low levels of this can cause additional fatigue. Hope you get to the root of the problem and some help soon!
pet48859 elaine62759
Posted
I did try a magnesium supplement but it disnt seem to agree with me infortunately. Hopefully i will get some answers soon. Thanks Elaine for promoting to get them pesky hormones checked 😃
lashae00 pet48859
Posted
i think may have POTS too. i cant stand up or move for longer than a couple minutes without rushing to sit back down. not sure if its worse bc my menstrual is do any minute but it has been like this the past couple of days. as soon as i get up my heart starts racing and i eventually get lightheaded. also i feel a pressure in my chest when i stand too long.
pet48859 lashae00
Posted
Hi there, this does sound like classic POTS - (from what I’ve read.) although I rang my docs & mentioned it & he never so much as commented. I’m not sure he even knew what it was! 🙄 I’m no expert but have tried to educate myself - we often become our own experts in the field, so at the minute I’m self treating. It can definitely be worse with a monthly, as blood pressure can drop around that time too. It would be worth investing in a BP machine to monitor this & a heart monitor (the finger one) they’re reasonably priced on amazon. If you check your resting heart rate at rest then again when you stand up to move around - if it shoots up by more than 30 and stays high for 30 seconds or more that is an indication you have POTS. When you stand the blood can pull low into your belly hands & feet, causing the light headed feeling as there’s not enough blood to the brain which also causes the heart to compensate as the vessels narrow to maintain blood flow. I bought some support stockings which I felt really helped to feel a little more strength in my legs. If your BP is low you could add more salt to your diet. Drink plenty of water as dehydration can cause dizziness. I probably haven’t covered it all but the brain fog is quite bad at the minute & cant remember, these were notes I kept about it, so probably missed things out. If you have an understanding GP you could talk to him & ask for an ecg & heart scan. I hope this helps a little.