My CFS story what can I do?

Hi there,

Just wanted to say there are definitely a couple of people on here with pots and cfs/me but, you may need to name a different discussion with this to get replies for that.

Sorry to hear of how you have struggled. Alot of research states that if you get cfs/me when you're young, you have a better chance of recovery so fingers crossed you will. The general idea is that pacing yourself and resting are what helps the most.

Hope that helps

Beverley

Thanks for the response. I guess I shouldn't have included the POTS question and put it into a different discussion like you said. I wanted to include it in the discussion because I heard that the two illnesses commonly coincide with each other but haven't seen anyone mention it in the CFS forum. I thought that it would be interesting to see the prevalence of the two illnesses coinciding together. My main question though was whether people think that I have CFS and what medications help them.

Sorry that you have the terrible illness and thanks for the advice. I agree that pacing yourself and resting is the best thing that you can do. My doctor has recommended taking some medications though and I am hesitant about taking medicine for CFS because we don't know what causes it and they're no FDA approved medications. In addition, for each suggested medication some of it works for some people but does not work for others and can have bad side effects. Have you tried any medications like Midodrine, Florinef, Lexapro, Mestinon, or Clonidine? Or have you gone the alternative medicine/therapy route? 

Hi there,

Not to worry you could always add a separate discussion later If you want to.

In regards does this sound like cfs/me, yes it does and I can only imagine how hard it was getting through school with this. I resat mathematics a year ago ( in the UK you need to have certain grade to become a teacher which Is where I was going before this) just this one subject shattered me. So, well done graduating highschool.

I take no medication but, I don't have pots only cfs/me. Pain wise, I don't take anything either as my system is now very sensitive and strong painkillers knock me out. Paracetamol I take sometimes. I think It seems to others I Can't be In that much pain if I take nothing but, I spend a lot of time at present resting in bed resting and the pain eventually lessens. I wonder if anyone has said fibromyalgia to you re

Your pain? I take vitamins to try to help with mine but, forget alot!

Just wondering is your family supportive with this? I feel It makes a big difference in how we manage the condition if we are supported.

Such a strange condition we have but, there Is Hope of more study into It and hopefully a cure. In the meantime, rest and pacing.

Best wishes

Beverley

Sorry to hear about your math course. I hope that you can find a path to becoming a teacher. CFS really makes it very hard to think and concentrate. It is especially hard to do well in math and other upper level courses. CFS definitely slows our thinking and processing speed way down. When I have a bad epsiode it is just total brain fog. I've never done this but I think that it would be a good idea for us to take online courses. Physcially going to the class and being there always wears you out as well as the mental work. Have your tried taking your math course online? As for graduating High School I was fortunate. Going into senior year the only class that I had to pass was 12th grade English. I already passed all the other classes in previous years.

I take tylenol too and also advil. They help with the pain a little bit but I find that resting helps the most. Nobody has mentioned fibromyalgia. I can see why you said this though because my biggest problem is the pain. Studies show that women are 10 times more likely to have fibro than men so it would be rare for me to have it. Although I think that women have CFS about 4 times as much as men.

Luckily my family have been very supportive. My mom is a nurse and is very supportive. Also I think that my dad has CFS but has mostly recovered from it. He has a whole bunch of allergies to things like milk, soy, gluten, and a whole bunch of other things. Basically he never eats processed food. He only eats meats, fruits, and vegetables. Whenever he eats the foods the he is sensitive to it gives him CFS symptoms. I don't think that I have this allergy CFS problem (maybe with milk) but I've heard that other people with CFS have this problem. Support is very important though. I try not mention it to people who are not my close family. There are a lot of people who are very skeptical and they don't belive you or they think less of you. Do you have good support?

Hi again, 

I may not have worded my reply well as I actually passed the maths but it was exhausting. I've also managed a couple of other little things like level 2 first aid. Am waiting at present to progress down the teaching, maybe next year I'll be in a better position. I'm glad you managed ok with your studies and tha you have  good support system. I really do think it makes a big difference. Telling people new is difficult, like you say because we look ok. Support wise, I have a mixed bag unfortunately. As I'll do things when I really ought not to. I need to say no more but, it's hard when you want a life as well : )

I too don't have milk products or wheat though see it mainly as a protien not a suger or gluten that causes issue. This was before CFS/ME though. We seriously need more research I feel into this awful condition. I know of quite a few people who recover so I have hope that for many of us, we will too.

Re Fibro, I wasn't aware of these statistics. I was chatting to someone on a different feed where they thought he had it but it turned out to be a different immune system problem.

Hope things are ok with you, it's really hot here at present, too hot !! LOL

Best wishes

Beverley

Thanks so much I live in the states. Yeah making sure that I have the right diagnosis is a good idea because there's no cure for CFS. Yes Mono is the same as glandular fever. POTS stands for postural tachycardia syndrome and is an increase in heartbeat while standing. While being in an upright posture it can cause lightheadedness, weakness, imbalance, mental fogginess, headaches and other symptoms. I've never explored cognitive behavior therapy. The doctor did refer me to a physcial therapy practice though and I'm not sure if it has been helping. I wish all of the best for you.

By the way, POTS is extremely common with ME/CFS. I have it, for instance, but have never mentioned it on this forum. 

Thanks for the response and being so helpful. I've had lots of bloodwork and have been to an allergist, rheumatologist, and an infectious disease specialist. They all found nothing through bloodwork. I could include all of this but it would be very long and I don't understand all of it that well haha. I guess that I was just hoping I had something else because they're no treatments for CFS and it's a terrible illness that some people don't recover from. I would rather be and I'm sure that you would rather be diagnosed with something that is curable rather than possibly treatable like CFS. Why couldn't you tolerate Florinef? I knew that lexapro is an antidessant. I don't know why he recommended it. I think a lot of people who have CFS are depressed and the depression make the CFS symptoms worse. I think that I've been foolish with exercising. I've been going to the gym or playing tennis about 4 times a week and feeling awful afterwards. I'm happy I am able to do this. It's awful that some people are completly bedridden from the illness. I sometimes feel better while exercising because of the adrenaline boost but feel badly afterwards. I agree with you about exercising but some articles say that building up your exercise tolerance helps with CFS even though it makes you feel bad. While some articles say to limit exercise like you're saying. There seems to be some disagreement among people. I agree with you though but think minimal/gradual exercise can help. Anyways I definitely need to cut it down because it's making me feel worse. Do you do yoga or any exercising?

Yes, there's always been this controversy about exercise. On the one hand, you have doctors who often have no understanding of ME/CFS recommend exercise. On the other hand, you have patients who try exercise and get dramatically worse. That's what happened to me, even though I tried a very gradual program of walking. Many doctors think our illness is "all in our head," and their recommendations reflect this. That's why they tell us to exercise and take antidepressants. In fact, the UK's national program for ME/CFS seems to take this view, and recommends graded exercise and cognitive behavior therapy. These recommendations are based on a study that's been hugely discredited. I tried yoga way back when I first got ill. I was unable to do it. It was simply too much for me. Regarding your meds, I can't remember why I couldn't tolerate the Florinef. I tried it several years ago. Also, if your doctor recommended Lexapro because he wrongly assumed you're depressed, don't take it! I know this is hard if you're ill, but you need to know the reason for every medication that's recommended. Otherwise, you lose control of your own health. Sometimes it's good to take another person with you to doctors' appointments to help out. I know this can all seem overwhelming, but this forum can be a great help.

Thanks for the advice. I know what you mean about doctors having a poor understanding of ME/CFS. A lot of primary care physicians definitely seem to have a poor understanding of CFS in general. I think some excercise is still good, if you're able to tolerate it, because excercising is just healthy for your body in general. I think that the amount of exercise people should do just depends on the person. Some shouldn't exercise while others should do some exercise depending on how it makes you feel. We all have different levels of CFS. I've seen some articles where people who where completly bedridden say that minimal exercise helped them.