• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Pen2

    Prayer Requests & Praises for Nov/Dec

    Dear RWP + PWR, and all of us in need of prayer ! This is a dark and sad world we live in isn't it. We can only remind ourselves that we are in this world but not of this world. I pray everyday for all of you. I have been having a really hard time for awhile now. It makes me feel guilty at...
  2. Pen2

    ME/CFS alert latest episode (exercise intolerance)

    Thanks @Gingergrrl . We are a lot different. I have had hypertention for years before I got ME. My baseline is normally 150's/ 80's so I was started on fosinopril. My whole family has high BP! Even my kids....:( So on Midodrine my baseline can go as high as 180's/ 70's ( my diastolic stays...
  3. Pen2

    ME/CFS alert latest episode (exercise intolerance)

    @Gingergrrl, do you still take the Midodrine and Atenolol for your POTS? I'm asking because I also take both. I like that you mention to treat symptoms and not the actual POTS. My blood pressure is very high , increased since starting Midodrine. I have never done IVIG since mine is not that...
  4. Pen2

    May/June Prayer Requests

    I want to thank everyone for your prayers. God is good, all the time. My husband has recovered fully from his prostate cancer. Hopefully it's gone forever. He returns to work on July 15th. Our gracious Lord heard our prayers!! Praying for a good/better day for everyone! In Christian love, Pen
  5. Pen2

    Comment by 'Pen2' in 'Graduation Outing'

    So sorry for your crash from trying to do what proud moms do. I hope you recover well. Big Hugs to you @CedarHome.
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  6. Pen2

    ME/CFS alert latest episode (exercise intolerance)

    There are so many different drugs mentioned here. I wonder if I need to look into these more. (It's also possible I take one or more similar drugs with a different name). I have POTS plus severe IBS so I wonder about changing my meds. (Although maybe what I'm taking is affecting my IBS like...
  7. Pen2

    ME/CFS alert latest episode (exercise intolerance)

    This is very interesting!! I will be asking my Primary if he has/will look into Dr Systrom. I can tell he has researched some but there is so much more he could do. Educate being the big one! (My doc that is) Thanks @Sidny, keep us updated! :hug:
  8. Pen2

    Comment by 'Pen2' in 'Facing the Memories'

    @hellytheelaphant....I always loved your blog too. You're an amazing artist!
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  9. Pen2

    Comment by 'Pen2' in 'Facing the Memories'

    So happy to get responses, that we all have old memories we need to make new. @Wolfclub, keep hugging your dog friends, it sounds so good. Not only do you feel happy but those dogs are so happy. I can see their tails a wagging! Maybe you can get a picture of your hugging. @hellytheelaphant I...
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  10. Pen2

    Facing the Memories

    Hi PR family!! I thought I would post on my old blog. Memories that I have recently had to face. I have felt sad.....but excepted them. I think a lot of you know I am a major horse lover! Once ME kicked me in the butt, I had to sell my horse. I'll never forget him though. Horses are on my...
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    • Blog entry
    • 2 min read
    • Comments: 6
    • Category: User Blogs
  11. Pen2

    Comment by 'Pen2' in 'Gone so long'

    Thanks perchance dreamer! It's good to talk to everyone we can, isn't it?
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  12. Pen2

    Anyone got hayfever / cat allergy etc and notice a correlation to symptoms ?

    Hi @ChrisD, I haven't given in and started antihistamine so I'm not sure. Do you have better allergy days? Maybe you can just take them as needed. My allergies have been bad too. My eyes are still the worst part and I use prescription eye drops. I break out in hives alot. They itch for a bit...
  13. Pen2

    Gone so long

    Hello PR family, I want to share why I haven't been on PR for a long time. First of all, it's about me. I have missed PR. A while ago I shared that I was dealing with alot with my family. My husband went through surgery for prostate cancer and it has been a very difficult recovery for him. So...
    • Pen2
    • Blog entry
    • 2 min read
    • Comments: 3
    • Category: User Blogs
  14. Pen2

    oh alcohol....

    So, I had hoped for alcohol....not helpful for me. I tried a mixed drink. Does it matter what type of alcohol? I had some vodka with diet coke. ( I know, soda) I just felt dizzy then very thirsty. I drank a bunch of water which in turn bloated my stomach! Needless to say I didn't have a good...
  15. Pen2

    Comment by 'Pen2' in 'Pt.1: Cancer, MCS and ME'

    I can only read a little at a time RWP but amazing your wife was able to recover at that time and you are amazing for learning so much so you could help take care of your wife. I will be back to read a little more. One question is, does an increase in urinary infections become a risk of cancer...
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  16. Pen2

    Comment by 'Pen2' in 'Not sure whether to go out or not...'

    So well stated @lior that this made me cry. How many times have I and I'm sure others felt, feel this way. There is no easy answer... Trying too much, doing too much with ME has not worked for me. Yet I wonder if doing something that's fun is worth the crash... I need laughter, being at a...
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  17. Pen2

    Comment by 'Pen2' in 'The Power of Hope'

    I have OI @Inester7. I have not heard of a peptides shot. Expensive!! Let me know since I agree with you, less meds is good. I hope you can tell how much it helps since the cost is big. Keep us posted. Thanks.
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  18. Pen2

    Comment by 'Pen2' in 'Keeping legs warm'

    I always have my blanket over my legs. My sister made mine for me too. I'm 59 so may an ME thing @Andrew. Thanks.
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  19. Pen2

    January prayer request

    Praying for your situation PWR & RWP. It's so hard to deal with unexpected challenges that are so important! God Bless you both in every way! In Christs love, Pen2
  20. Pen2

    January prayer request

    Hi everyone, I wanted to request prayer for my husband. He was diagnosed with cancer yesterday. He will need more tests before we will find out what treatment plan he will need. Please pray for him and us that God will give us the peace of His Grace through the whole process. Thank you all...
  21. Pen2

    Comment by 'Pen2' in 'Enriched list of items to increase or decrease specific bacteria shifts'

    Hi @Lassesen, I have tried to follow your blog on bacteria, I'm afraid that my brain just doesn't soak it in. I'm totally confused. I was wondering if you could answer a question for me though. I have severe IBS-C. Unfortunately the DR I see is anti ME/CFS. He's treating me with Linzess to try...
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  22. Pen2

    Comment by 'Pen2' in 'What I'd like for my 53rd birthday . . .'

    @RWP, first of all, Happy Birthday! I am with you. What you want for your birthday is what I want. I am tired of the looks we get, mostly from doctors! Ignorance. So I pray, for your birthday, that these doctors would at least read up about the research. Give us a chance at recognition...
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  23. Pen2

    Comment by 'Pen2' in 'Open Letter to Investigate Medical Abuse'

    Thank you Jeremy, well done. I still have hope because of people like you. I am one of those who is unable to study, work , or even do housework. Driving in traffic scared me so much that I would be in tears. I only drive around town now on my better days. ME, why don't out health professionals...
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  24. Pen2

    Comment by 'Pen2' in 'Filling the down time'

    We definitely have enough down time don't we. Have you started writing yet @Stretched? I remember someone telling me, (when I wrote in a journal) to just write don't worry about the spelling or what words you use. Do the rough draft then you go back and change what you want or add . things...
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  25. Pen2

    Comment by 'Pen2' in 'Filling the down time'

    Dear @Stretched, To me it doesn't matter if your a gifted artest. When you learn and try to do something you're interested in that is what matters. You go, you do , write with all your heart and be proud of what you write. I bet you will surprise yourself. It will feel good inside. You don't...
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  26. Pen2

    Comment by 'Pen2' in 'Anyone tried cannabis?'

    Thank you @Jesse's mom, It's semi legal here in MD, but the process to get it is ridiculous! You have to apply for it, your Dr has to have a license to prescribe it. Then IF you're approved, you have to find a distributor place. I'm just wondering if it's worth it. Sounds like it's worth it for...
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  27. Pen2

    Anyone tried cannabis?

    I was reading several articles on cannabis. These were current articles and studies. I know quite awhile ago there was some discussion on but here but thought I would ask you all anyways. According to what I have read, cannabis can treat ALOT of symptoms that we suffer. I know we are all...
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    • Blog entry
    • 1 min read
    • Comments: 6
    • Category: User Blogs
  28. Pen2

    Is CFS really worse than Cancer?

    Hi @Worried1230 , They really don't know what causes ME/CFS like @PatJ said. One theory is it's caused by a previous infection one had. Like, Limes disease or I had a fungal infection in my lungs, it could be any infection. Even though you may not know you have one. I'm sorry, reading about...
  29. Pen2

    Pulmonary test results - anyone knows how to read it ?

    I just noticed @Lipac gave you a really nice thorough explanation. :rolleyes::thumbsup:. I didn't see the full test results till just now. Not bad @Dechi :)
  30. Pen2

    Pulmonary test results - anyone knows how to read it ?

    @Dechi and @Gingergrrl, there are many different tests. The FVC is your forced vital capacity. How hard and fast you blow out all the air in your lungs. That's why they keep saying, blow blow blow blow.....:lol: To make sure you get all the air possible out. There's one called a peak flow that...