Hope you are all as well as you can be as we all live with this illness Fibro and it's various symptoms plus associated ailments?
I wanted to pop in to say how I miss you all very much and sorry I haven't been around as much as I would like to have been. I have been suffering more and more fatigue lately.
I also wanted to share this recent EULAR Guidelines link for Fibromyalgia I came across dated 4th July 2016
I believe from posts from the Fibromyalgia community that have read it thoroughly that is centres a lot on exercise strengthening muscles and exercise intolerance. But as we have always said we would have the motivation to do this as we all want to get better but we need adequate pain control to be able to even start Graded Exercise Therapy (GET) ! Plus if we start GET we have to think about the Push and Crash cycle of fatigue plus any other illnesses or symptoms we have which may limit our ability to do any GET.
So, it sounds very well in theory but in practice there are many variables that affect many people that prove to be an obstacle to GET especially if you have ME/CFS/SEID as well as GET has been reported to cause it to worsen due to a build up of Lactic Acid. I will try and find a source to back this up and add at a later date.
Please do read and provide your opinions of these EULAR guidelines as I would be very interested to hear from you. I will do the same and discuss it further with you all
All the best
Emma
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Mdaisy
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Hi Emma this all sounds very interesting. Can't read all of it. As using iPhone. But thank you for posting. I hope your fatigue. Eases up as much as possible soon. X
Thank You Hidden for your kind wishes - Oh what a shame you cannot access it at the moment, maybe someone you know could print it off for you at some point hopefully.
Helloooooo! Lovely to hear from you ! Funny you should mention exercise, I had a physio out to me on Friday part of rehab team here in Powys , and because I have MCTD as well , I can't do anything to strenuous and as I don't make colenege very well either , so anyway she is starting almost from the top and working her way down , it appears I don't have very good middle back muscles so I have to practice very gentle exercises there, and I haven't been holding up my head properly ( now @smilealot40be nice ) so I have gentle neck exercises to do and I have to say my middle back shoulders and neck and headaches have been really bad of late but thought it was all stress , I had started to hunch up so badly, now ladies I am putting my shoulders back and the blades down and my boobs out the pain is getting less but it's tiring 😀😄😬 "@Smilealot40" be nice and "@fenbadger " ☝not a word ! ☝️ "@fibroFoggy"where are you when I need you ?
Back on topic so your post Emma is really topical for me , hope you manage to get to grips with fatigue soon , gentle hugs Emma lovely to see your icon at the top of post .
Long time no speak - glad you have been seeing the physiotherapist and hope this does help to strengthen muscles.
When I saw a physio well over 10 years ago as I mark the 10 year anniversary of symptoms 2006 - 2016. Then the work we did, was undone each time by the Fibromyalgia's affect on the muscles to tense up before next session. So I was discharged quite quickly, however I think that this was probably in a time when it wasn't as well known and now 10 years on it is better between the multidisciplinary team in some areas. Although we still come across the Consultants stuck in the past and still acting like Dinosaurs !
I do believe in Graded Exercise Therapy alongside a combination of therapies however it has to be individualised to the patient needs, complexities and symptoms and personally believe that it has to be the right time for the patient mentally and physically to have any success, in my own personal opinion. Would you agree?
Hope you see some improvement Chris and lovely to hear from you
Yes Emma I do agree , I have been trying to get help since I became to unwell to work as you know , and now I feel it's a bit to late , as my weight has gotten worse and instead of helping me right from the start to stop my deteriorating get so it was irreversible, now my mind set is its to late I need a wheelchair to actually enjoy life now and major work has to be done on my home as a temporary fix till a bungalow becomes available 😔 All the added expense if they had in place as soon as sever deterioration had began I would not be at this point 😡
I saw a physio about 18 months back and although some of the more strenuous exercises made my pain worse I found the stretching and the core exercises have helped. The acupuncturist I have just started seeing feels that stretching to keep our muscles supple is the one exercise that the majority of fibro sufferers can benefit from.
I certainly am walking with longer strides and can reach up for items much easier. Initially it was really had work and there was some increased pain but I kept on going and have reaped some rewards. When I can concentrate a bit more I will thoroughly read the post.x
I have started there to read what I could and understand but my brain has ran away and left me stranded for tonight. so will read again tkmorrow . looks very complex and I'm not very educationally trained ... thank you for this report though xx
Thank you so much for posting this Mdaisy it was a fascinating read. I was a bit taken aback as it says 2979 titles were identified, as somebody had to read them to whittle down to 275 for review?
Reading this it does appear to emphasise that exercise is the best policy? As many of the drugs; (Pregabalin as an example) only appeared to help 30% of patients with pain? I also think the acupuncture figures (going on my own poor experience of this) are quite high? As it made me feel worse! One of the reviews rates ''hydrotherapy'' very highly which is something that I cannot undertake due to my COPD.
Overall, it is very interesting and exceedingly good for highlighting facts and figures (which I really like in studies) but I will need to read it 2 or 3 times for more information to sink in. I am not as absorbent as I use to be (I sound like a toilet roll now? he! he!).
However, I really did like the summary as it was honest in it's remarks. As treatments won't change that much and it allows for a move from opinion to scientific evidence which has to be a wonderful start!
Thank you so much for sharing this Emma, and please take care of yourself.
It's not a one size fits all regarding suffers. I believe in gentle stretching and moving what ever part of your body you can when you can so to keep your muscles. But as one who had enjoyed walking, especially fell walking, striving for fitness was an easy task that will never be in my grasp. I do not give up though, eating a low carb high protein diet and going to the pool, when I can, I have managed to get from unable to hold myself upright to swim(well move unaided for 10mins) it took me 18months. I still need a wheelchair and days rest and have long periods when I can't get to pool cos exhaustion or pain.
So I would encourage everyone to do whatever you can, when you can, be realistic don't overdo it but congratulate yourself whatever can do. Like dieting choose the form of exercise you like and can stick at. Kitty x
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