any advice thoughts

[LISAANNE1983]

does anyone else who has pots find that when they are feeling really ill that there blood sugar levels are low i have found recently when i am going through bad patch that blood sugar levels can go to 3mmol. yet i am not diabetic. also does anyone hae problems with their kidneys. i have had many operations to patch kidneys up and they are ok but they are sensetive to medications and when i take anything generally i get uti's and kidney pain. as such i am concerned about taking any medication for the pots as i cant even have a painkillers without getting ill. anyone else in a simmilar position? id love to here back from you

[halbashes]

Yes, thank you very much for the clarification.  Chronic fatigue is one of the symptoms in Dysautonomia, but I wasn't sure how it differed from Chronic Fatigue Syndrome.  Thank you again for clarifying, I had never heard that term before.

[LISAANNE1983]

M.E. (myalgic encephalomyelitis) is a chronic illness that affects many body systems and their functions. The formal term used currently by the medical profession is Chronic Fatigue Syndrome (CFS). The changes seem particularly to affect the nervous system and immune system, but they also affect other body systems. The illness can cause profound exhaustion, muscle pain, problems with mental function such as memory loss and poor concentration, malaise and other symptoms.  HOPE THIS HELPS TO CLARIFY .

[halbashes]

May I ask what is "ME" in the ME/CFS abbreviation?

[halbashes]

I too have hypoglycemic episodes without diabetes.  I don't have any exact statistics to share, but I've known several individuals to have Reactive Hypoglycemia as a part of their Autonomic Dysfunction.

If low blood sugar is becoming particularly bothersome, then I might suggest you see a nutritionist.  He/She could help you develop an appropriate dietary plan to better control your blood sugar.

My hypoglycemia is controlled by eating frequent small meals, and avoiding sugary snacks unless they are accompanied by a good source of protein.

[kitonthemoon]

Hi, LisaAnne,

I have ME/CFS and all the other goodies that are mentioned here.  ME/CFS is a multi system illness, meaning it affects almost every part of our organs to a certain degree.  We tend to low blood pressure.

Like you, I am also super sensitive to medications. Many supposedly successful remedies/drugs are proven effective to many others are either too potent for my system (meaning unbearable side effects) or have no effect on me at all.  When I must take pain meds, I always take it with starchy food, otherwise, my stomach will paid for it, one of which is nausea.

I too, use pain patch, as I'm wearing one right now.

Hugs,
Kit

[Thinline]

Pain medication is now available in the form of a patch which you stick onto your arm. I am unsure of how many types of meds come in this form, but I do know that I have been on a fentanyl patch for six months now, but its a very strong drug and you have to have developed a tolerance to morphine in order to take it. There is another patch I know of which is good for localised pain, I don't know if I'm allowed to say the name here, but the moderator can take it off if it is a problem, anyway since I am in South Africa it is probably sold under a different name, but it is called TransAct Patches. I use them a lot and find them really good, but they do tend not to stick all that well and they roll up and get a bit yukky, they have a great smell though. Maybe you can try them, over here they do not require a prescription from a doctor, they are available over the counter.

Hope that helps a bit.

[LISAANNE1983]

thanks for letting me know. it good to here others in a simmilar position not that im glad you get ill just that im not alone.

[PlateletGal]

I have CFS/M.E. and on my bad days.. I have the tachycardia and very low blood pressure (POTS).

[molly0]

My daughter and I both have reactive hypoglycemia with our dysautonomia, and we aren't diabetic either.  We have a blood sugar tester, and never eat sugar without some kind of protein.  We were told that it's not unusual to have reactive hypoglyscemia with our autonomic symptoms.  My daughter is also very sensitive to all kinds of medications.