Been A While

[medicmurphy]

Greetings to all of you,

It's been a few months since I've checked in to the forum. I've been browsing and can see some of you are still actively battling this nasty syndrome. I also see that there are a few more members.

The last I posted was about attempting to increase some exercise in an attempt to help build more stamina. This summer brought consistently beautiful warm temperatures which in turn graced me with my first and longest "remission" EVER. (Warm temps coupled with sea level has always been my greatest ally. I'm a different person in tropical climates.) I actually experienced what it is like to be "normal"! No fibro fog, increased energy, only minor pain, and restful sleep. I trained and ran two races...a 5k and a 10k, and started training for a half marathon. I always knew that I was living on borrowed time, and it was bliss. Now, winter is here, a least where I live. First snow fall was a month ago and hasn't left. The temps are fluctuating in a crazy fashion so that means one thing.....I'm back in a flare. The pain seems worse because I've been relatively pain free for several months so I'm a big baby lol Currently I'm on no medication except for pain when needed. The positive effects of the increased physical activity lowered my blood pressure and heart rate, which is the best it's been in years.

So, long story short, there is hope people. I haven't felt "normal" since 2007. What I just enjoyed was the randomness of FM/ME. It was great, almost like a reserrection. I'm still plugging along, keeping my workouts up but paying more than the usual attention to my body.

I'm sharing this because I know we are all struggling. To whatever extent you can, keep moving in some way. Never in my wildest dreams would I have thought the dark cloud of FM/ME would randomly lift. What it showed me though is I was able to achieve far more than I ever thought possible. More than anything, it was wonderful to say out loud that I felt good. The emotional benefits are priceless as I now feel a wee bit more fuelled to tackle this flare....which will more than likely last all winter.

Thank you for reading this update. Please keep fighting. Personally i like hearing how fellow sufferers conquer this beast so I hope this post will do the same because whatever we achieve is always the result of a huge effort and should be celebrated.

Cheers

 

[vickythecat]

Thanks for sharing your story.

I personally have been having a really rough time, feeling completely hopeless. I have nothing to look forward to, I can't even get out of the house to go to a doctor for help, or can't even go to the shops to buy some flowers for myself as a gift. In that state day in day out, the world seems so very dark. The pain, fatigue, the dark thoughts, past memories = a body and mind that won't allow you to have that tiny sliver of hope.

So thanks again for sharing your hopeful story.

 

[medicmurphy]

You've been fighting a tough battle Vicky. I can sympathize with you as I lived a similar existence. Last winter I was pretty much bed bound. Trying to keep positive was a tall order. I'm hoping I don't slip back into that state again for I felt I was watching people live their lives around me while mine seemingly slipped away. Fibro has been in my life for over 27 years and ME for a year. For the first time in 10 years I was reminded what it was like to wake up energized, ready to tackle another day. These past two weeks are slowly bringing me back to the reality of these hideous conditions again. Winter is my nemesis.

What's particularly frustrating is the lack of reliable treatment so that it leaves ones like you feeling hopeless. I'm so sorry. With this current flare I'm going through now I know there is no medication that will help, except for pain. I've tried it all....several times. Sending hugs

 

[diamond]

Nice to hear from you Medicmurphy...only the other day i was thinking about the people that had disappeared and its usually because they are doing well or at least found ways to have a reasonable life with ups and downs.

Your name popped into my head.

I have never heard of ME going into remission...i know some people experience fibro with ups and downs where they can feel pretty good but i didn't think ME was the same at least not the extent people can run your kind of distances without huge pay back almost immediately afterwards. So bravo for the summer achievements.

Did you see the recent Jennifer Brae movie or trailer ...a film about one young womans journey with ME where she can now function within about 20/40% activity levels from bed bound.

Anyway welcome back and sharing your positive story. Im in vickys position and its hard to find hope after years stuck in severe pain and i do know from my past experiences when you have had better times it is easier to deal with the bad....but still your heart sinks and fear can set in if it drags on a long time...so i hope your winter flare passes before Spring.

 

[medicmurphy]

I'm not sure Diamond. All I know is I was diagnosed with CFS a year ago after a very long time of worsening FMS. I'm talking years. What happened between June and Oct I can not explain. My Dr was cautionary, reminding me to be careful because she knows I push myself too much which results in me hitting the wall. I could barely make it up the stairs in my condo. Perhaps my case is less severe? IDK.

 

[sunkacola]

Hi medicmurphy. I am happy to hear from you, although it would make me even happier if you stayed forever feeling so good you didn't even think about fibro any more and forgot there was a forum!

I, too, find warm weather is easier on me for the most part. I am fortunate to live (for now) inn a place were the climate is warm, but I spent a lot of years living more or less where you do and know what that is like as well.

thanks for the update, and for again encouraging people to move and exercise, as much as they can. I also believe that it is key to keeping the worst of this at bay.

 

[medicmurphy]

Thank you Sunkacola, I understand that exercise is not the answer or cure for FM, and least of all ME. I guess I try to be positive. I was excited to share what happened to me; from being bed bound to living with only half the symptoms. Many on this forum have far greater struggles than I do.

 

[diamond]

It is good to share medicmurphy it could be just the thing that inspires some people to feel more optimistic.

I may have asked this before way back but I am like you were when you could hardly make it up the stairs except all the time since 2015 ...and on and off through the previous year and to a lesser degree sometimes in the previous 7 years to that back to 2007....but for thise first 7 years i also had much much better days out and about and walking for about an hour at a time ..able to do all my house chores in bite size chunks quite easily although i ached afterwards...lol but then everyone does.

Did this extreme inability to move just pass suddenly or slowly for you? And also when its that bad you will know from experience its not a feeling you can push through otherwise we would get up those stairs and around the house ok just by will power which im sure the same for you it just isn't possible at the time.

I just wondered how your body changed from that to running 5k....did you feel the pain ease from those days of barely able to move so you could start to exercise and did energy gradually return or you just tried and gradually it happened.

Hope not too many questions as soon as you are back.

 

[medicmurphy]

@Diamond,

The diagnosis for CFS came after at least two years of a drastic decline in energy and activity. I was diagnosed with FM in 1990. Medication failed even after retrying the same RX "just in case" it would work this time. So, I went off all meds, except for pain, because not only did they not provide me relief but the side affects made me feel worse. As time went on I slowly worked on increasing my activity. Started with walking, then a few minutes on a stationary bike, then onto run/walk intervals, then added light weights and so on and so on. This took months and months. This summer was unusually warmer than my area is generally accustomed to and was consistently so. Because I live near the mountains, weather can fluctuate randomly along with the barometric pressure. When this happens my FM acts up. I didn't wake up one day with little symptoms and decided to run 5k. It took a lot of work. I'm not speedy, but I plug along anyway. I joined a running club where there was positive encouragement from others who live with FM, CF/ME and other autoimmune conditions such as Psoriatic Artheritis. There motto is like mine, "if I'm going to hurt, it might as well be for a good reason".

That said, I'm very well aware that there are different severities of FM/ME. Some can do more than others. Obviously my health is not as delicate as others on this forum. However, because I managed to achieve what I did for a few months does not lessen where I was before and where I am now. Maybe the CF ran its course like it can. The thing with Chronic Fatigue is it can have a beginning and an end. The length of time is different with each person. Perhaps I'm recovering from it? IDK. I'm still only able to do one thing a day. If I do some sort of gym workout, nothing else gets accomplished that day. For example, I had my daughter and grandson for dinner last night, so today I'm beat and will most likely live on my couch. Like others on this forum, everything in life is a trade off. I've learned a bit more on how far I can push myself. Rest days are essential. If I go out on a run/walk one day, it may take me 3 days to recover. To me, that's worth it.

In conclusion, this change was very slow. May have involved a recovery phase with the ME, who knows?! It involved lots of work, pain and tenacity, and my Dr was involved with monitoring me. Like the medical community, I can not explain this any further. These conditions baffle us all. My reason for sharing was to encourage, not discourage. I understand many on this forum are stuck in a dark vortex of never ending symptoms. I had hoped to share positivity because we can live with so much negativity where more focus is spent on the bad physical aspects of these conditions which risks us spiralling even further down. I hope my medical condition isn't being questioned because I experienced some relief this summer. This saddens me. I never truly left this forum. I continued to check in and browse from time to time. And no, Im not aware of the documentary you mentioned. I will look it up and take a boo at it.

 

[diamond]

I appreciate you explaining how you progressed and my comment about people leaving the forum was genuinely meant that i noticed you and a few others hadn't been around in a fond kind of way.

It is true historically that most people come here for a while then disappear and we have had threads with peoples ideas as to why and many have said possibly because the support we often all seek either through first diagnosis or through worsening times may no longer be needed....that's a positive because it means people have often found a way to cope and make a life where they don't need or have time even to be on a forum.

Anyway i am no expert at all about any of it just an innocent comment about some familiar faces not being around anymore like Forgetmenot who was a regular for months and Tipbill and i genuinely wonder are they ok and how they are doing out of concern as an investment in peoples lives and well being grows over months or years of posting.

I wouldn't dream of questioning your diagnosis..My father has had ME for 40 years and i hadn't heard of such great achievements with ME/CFS.

He also struggles to walk in all that time and was initially hospitalised for 3 months..but my experience is not broad like yours with people with ME/CFS in a running club.

I also know 4 other people personally with fibro or CFS and like you say all have differing levels of ability. One can only walk for 5 minutes after trying for 5 years to build up more with hospital support too....another can still travel abroad and paints for a living and is more mildly affected....the other can walk the dog with her hubby sometimes but then on the couch for the rest of the day and pretty much the same for 20 years.

I didn't know CFS or ME could run its course and end. How marvellous.

 

[medicmurphy]

@Diamond.

No worries. I didn't think you were being critical at all. I've lived with FM since 1990 that worsened in 2007 when both my parents died. For 10 years I battled that with chronic respiratory infections, worsened eye sight, anxiety, panic disorder, fevers, body temperature regulation issues, migraines blah blah blah. The last two years were a nightmare to the point I stayed in bed. Like everyone here my social life blew up in my face and I had to retire from my job. I could go on with the myriad of symptoms. I have no idea why I experienced a temporary reprieve (no other way to explain it). I say temporary because I'm currently in a flare. As far as the C/F, chances are I developed that years ago and finally received the diagnosis. Just as others have reported, it took a long time to have it recognized. Yes, some who live with these illnesses may be higher functioning or, in a recovered state. This running club also have runners who live with Lupus and RA. They are housewives, mothers and grandmothers who have rediscovered life and fitness. They are far from elite athletes. Just average people who are fighting for some quality of life. Although I do not claim to know everything about ME, I do know that some patients recover. I have no idea if they recover to the point of pre disease. However, I do not question these women have these conditions. I speak from experience. I admit that my FM at the moment is the biggest pain. Just like many autoimmune conditions, some patients have it harder than others. I have a friend with Celiac's who has very little issues where someone else I knew years ago was deathly ill. My mom had a friend with CF who ended walking with a cane but years later no longer needed it. Go figure hey? I should correct what I said about ME running its course. Rather, although there is no cure, some people are able to regain a measure of their activity level back. I will also add that some patients do experience remissions with FM and ME. Not only have I done the research but I also have experienced this myself. This is hopeful for all of us living with these conditions.

 

[sunkacola]

"if I'm going to hurt, it might as well be for a good reason".
That is my motto as well.
Having said that, like you, I know that people have very widely differing abilities and severity of pain.

And since so little is known about all of these things, it is good to maintain a positive outlook, as most of us do here. Remission can occur, and spontaneous cure can even occur, even with diseases for which they say there is no cure.

I wouldn't ever advise living on hope for a miracle. But I think it is worth always trying to do what you can and never give up! Do more, do less, as you need to, but just never ever give up on trying. In my life, persistence has proven to accomplish things that people told me I could not do. I just didn't quit trying.

 

[medicmurphy]

. Hope is positive. Much better than dispaire. It is true each of us has different capabilities. My endeavour is to be positive. Certainly not to be discouraging.