Posted , 6 users are following.
Hi me again does any one seem to know anything about fibromyalgia?? Im really starting to think this is what GF has lead too?? So scared as this is long term?? It sounds very similar to what im experciencing?? Anyone else felt similar?? I feel so down 😞
0 likes, 19 replies
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Poppy89
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Poppy89
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catchthebus Poppy89
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Hey, I think that you need at least 2 years since first getting sick to jump to any conclusions with this disease. I had a lot of horrible symptoms, and my lymph nodes still hurt 14 months later, but I'm still getting better.
craig07920 catchthebus
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Craig
kris0633 Poppy89
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I've been dealing with Reactivated Mono for 9 1/2 months. I have had Fibromyalgia for over 20 years. When the mono first onset last year, I thought I was going through a rough patch with the Fibro. For me, the body aches and such of Mono and Fibro feel very similar. I never knew I had Mono the first time around, so when I was diagnosed with Reactivated Mono, I was surprised and confused. Upon reflection, I've realized that I most likely had a mild case of Mono in high school and just thought it was the flu that hung on for awhile.
Anyway, I'm now partly wondering if I really have Fibro or if Mono has been giving me long-lasting issues. Either way, I don't think it really matters. Leading a good healthy lifestyle (easier said than done) will help me with both.
I don't remember your story about how long you've been dealing with this, but hang in there. At 9 1/2 months, I'm still struggling, but sooo much better than in the beginning. That being said, I'm having vision issues and brain fog this morning, so pleases look over any errors in this reply!
Take care,
Kristin
p.s. I did see a rheumatologist years ago and I did not have RA
craig07920 kris0633
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Thinking about you too Kris what a terrible time you've been through by the sounds of it, just praying for God's intervention and healing hand in your situation - hang in there and believing that there is better times ahead for you, I really really believe that.
Craig
craig07920 Poppy89
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Hi Poppy,
So sorry to hear you're still struggling, really hoping and praying for a breakthrough for you. I don't know much about fibromyalgia but I do think many of the ongoing symptoms of mono can mimick those, so please be reassured by that that the symptoms are most likely still from the mono and not anything else. I know it's so hard not to worry though, thinking about you and just praying for God's help for us all at this time we're going through. Hang in there Poppy.
Craig
lisa29739 Poppy89
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Hey there Poppy. I was tested for a bunch of auto immune diseases and they were all negative. What I've read about fibro is the exercise can help alleviate it some. But exercise makes me sicker. So I don't think that's it.
I'm at one year the end of this month. Acupuncture has helped a lot. And I just had a full huge panel done for every vitamin, mineral, amino acid, everything that I could be deficient in. I get the results next week. I'm hoping that something there will show up and I can know exactly what to take to start feeling better.
Hang in there. I've been down almost every road including Lyme, CFS, Fibro, Lupus, heavy metal toxicity, etc. So far everything is negative.
Poppy89 lisa29739
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Thanks for your reply.
Im so fed up and drained with investigating everything is just a worry certainly not normal to feel this way. Just confused as my symptoms have changed alot over the last 7 months and now seem to really match up with fibto. I just need a doctor to tell me this is going to end. But i very much doubt that. Ive had medium to bad days most of the way throught and very little ok days this scares me to think the rest of my life is going to be like this
sorry for all the negatives but i cant help feel this way also if it is any of the above things there is little a doctor can do in any of them this also is disheartening suppose ill just have to try keep battling on.
Wishing you answers and recovery real soon.
craig07920 lisa29739
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Hey Lisa,
Hoping that these test results can offer real reassurance and hope, I'm also going for some blood tests too today won't get results until next week a bit apprehensive as ones I had this week showed some high markers relating to kidney. Praying that God blesses your tests Lisa, it's so wearying to go through this for so long and I know you must be so tired - hang on in there I get a sense that there is light at the end of this tunnel for you and it's closer than you think - really hoping and praying for a breakthrough soon.
Thinking of you and hoping for a good and settled weekend for you and everyone!
Craig
youngboy238 lisa29739
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I’m glad you have gotten all these blood tests in, that’s great! Also glad that you don’t have a secondary major problem like an autoimmune disease. And now your around one year! Usually people say that after the first year they get much better and recover! And I’m hoping that’s the case with you.
And yes if there is something you are deficient in, you could fix that. But even if there isn’t, you say that overall you have recovered lots. Which is great! That means that your going in the right direction and it will end for you.
For me, I’m worried because I’m not recovering. I feel like my setback is more than just a setback. As it’s not getting better and is just slowly getting worse, and worse. And it’s not getting better. Also it’s been going on for around 2 months and I haven’t seen any glimpses of being back on track yet.
And yeah, exercise also makes me feel worse. The more I would do, the worse I will feel. But I hope you start seeing lots of improvement soon Lisa! I believe there is a turning point coming for you, and you will be brought back to full health. Hang in there!!
Youngboy
lisa29739 Poppy89
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I keep track of my days on a calendar. Usually I’m in the medium Days with a few bad and one or two good days in a month. I can’t wait for a normal day. I know it has to come. Or at least science and the medical community get a breakthrough and are able to treat us.
Sending all my thoughts to you for some real progress this month!!
lisa29739 craig07920
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Do you remember with mono- that you relapsed if you did too much? Last Friday the pain and weakness lifted and I had several good days. I think I did too much though as this morning I woke up with the therfibke limb weakness and pain. Sigh.
craig07920 Poppy89
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Hey Poppy,
So sorry things have been so tough for you lately, remember things do get better with this awful virus - it's still normal after 7 months to be struggling and then go on to make a full recovery - really hoping for a turning point soon for you hang in there and remember you are going to get better - this definitely won't be forever.
Craig
craig07920 lisa29739
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Thank you LIsa for your kind words of support, means a lot right now just having a hard time and I know that you definitely know what that feels like.
Yes with mono I definitely remember doing too much could set me back or cause a bit of a set back, it's so frustrating in that respect that you maybe think one minute yes I'm getting over this and then do normal things then for a few weeks it feels like hit with a train again - this is normal Lisa it will pass though, your body resilience will return and hang in there thinking about you.
Craig
lisa29739 youngboy238
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I’m so sorry you are in such a bad spot. It’s just the worst. I have the scary fatigue again and it throws me with panic all over again. Are you able to sleep? Do you have a good doc or a good natural path doc? I found finding a really good doctor helped ease my mind a lot. And know that this isn’t permanent. Even though it feels like it is. Your body got better once and it will do it again. Trust in that!
youngboy238 lisa29739
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Yeah I am very stressed too. As I have weird colds too where it feels like a cold is coming in, but it never fully comes. And it just lingers like that. And I read that lots of people with CFS have that too. And that worries me a lot. And my doctor just gives me blood tests and stuff, and not much else. Also at the beginning of my setback, I wasn’t able to sleep much I was really stressed then too, but I had weird sleep patterns and was sleep deprived. How are you feeling? Worse than usual? Or just ups and downs? Sorry that your still struggling though!! Remember to pray and I believe 100% in your recovery!!
Youngboy