Hi, sorry in advance for this long post, hoping you may be able to help. I was diagnosed with fibro 4.5 years ago. When I was 21 I had chicken pox, at 24 I started with fatigue and pain in my arms after giving birth to my second child. 26 Glandular fever, after this I started noticing chronic fatigue in my legs only when I had my period. Adverse life events meant I was under chronic stress and at about 43 I got what I thought at the time was shin splints, now I know this to be fibro, At 45 got shingles by this time I was in pain in my arms and legs daily. Age 47 hit menopause, age 49 chronic stress increased the pain to my neck then a flu like virus which I didn't recover from. Chronic pain and chronic fatigue, Ibs, concentration and memory problems, unable to sleep without meds, tingling, stabbing, popping, nausea, migraine, sensitivity to certain foods and alcohol, sensitivity to light, unable to lift a cup, brush teeth, walk up stairs, walk from chair to setee, spams, etc etc for 2 years! Pain unbelievable. Diagnosis fibromyalgia. Almost 5 years on I now get "better days" by this I don't mean symptom free I have a constant pounding sensation difficulty regulating temperature and all of above just not every day thankfully. Fatigue is a huge problem I can start off walking great but never know when it will hit, and it's different all the time! one day I can walk a mile and back another only a few steps before it kicks in, no warning.! I am now having an assessment for M.E. Can I have both or has it been M.E. all along. ?
Fibro or M.E. ?: Hi, sorry in advance... - Fibromyalgia Acti...
Fibro or M.E. ?
Hi, this post sounds so remarkably similar to myself,, and yes unfortunately it is possible to have both fibro and m.e. as I am all to aware and probably many others..
good luck with the assessment
Steve xx
Hi Steve, thanks for responding to my question. I am so sorry to hear you have been on the same journey. I hope that you aren't suffering too badly at present. Do you ever wonder about these viruses and toxins left behind ? I wish we knew for certain what causes these dreadful symptoms. I have today had so many blood tests sent off before seeing the M. E. consultant than I ever did for the fibro diagnosis which was done in less than 5 mins once arthritis, lupus etc was excluded, I haven't been offered any help over the last 4.5 years except try this or that med which all made no difference even tramadol didn't help the pain, so battled on alone with amytryptiline to help sleep. My doc was really surprised to hear that things not much improved when I decided to pay a visit it was then that all these tests were ordered and the M.E. consultation organised only when I mentioned it.
I know what you mean, I have been struggling 38 of my 45 years.. only diagnosed in March, but as yourself it's try this tablet, try that one.. not been sent for physio or pain management. Only just going to see neurologists in next 2 weeks
That is because no one knows what causes Fibro and for now only can treat symptoms . Everybody is different, what works on one person does not work on someone else.
Wow...sounds like my life. I am new to this site looking for support and information. I tested a positive ANA 2 yrs ago and thought I had low end lupus. Started taking a digestive enzyme, and my Ana went negative. Rheumy said I didn't have lupus because I was still able to bike ride and exercise. I have noticed recently that I have to push myself to exercise because of terrible muscle weakness and overall tiredness. My sister, who is a pediatrician. Keeps telling me it's nothing just getting older. (I am 52). I have scarred kidneys which the kidney dr doesn't even know how I got. Great! I have arthritis in my back and feet...sluggish thyroid, lymphatic......positive for prothrombin gene mutation (clotty), sore throats, dizziness, ear inflammation. Just got diagnosed with dry eye. Intestinal problems, headaches, pain in my left leg and arm....ugh! Terrible nerve pain when I barely hit my toe on something. Still looking for answers.....hope you can find some and share. What is ME if you don't mind me asking. Take care...
Hi. I'm diagnosed with both. The ME was diagnosed a year and a half later after my fibro had calmed down and the persistant fatigue, sore throats and other wonderful things remained. At the moment my pain levels are quite low (lucky I know) but the fatigue is totally debilitating at the moment.
Hi Minx88..I can recognise myself in what you say but no one ever joined up the dots. ....can I ask...do the doctors believe your Fibro is in remission? And who diagnosed your ME? You can see from my recent posts that this issue is currently a big one for me! Any help, info etc welcome. Thank you!
The same GP who diagnosed the fibro diagnosed the ME a few years later. No not in remission just well managed and not in a flare up, i know because as soon as I overdo it the pain shoots right back up there.
I'm in trouble with the ME at the moment. Was exhausted just after putting my clothes on!
Thanks minx88x. ....sounds like you have a good GP /GP relationship. ....would be interested to hear what things you have found have helped you manage your Fibro so well (all credit to you)?
Sadly I know that one about being 'exhausted just after putting clothes on'!! I am finding Fatigue a real challenge. ....I mean just what CAN I do when my battery is flat? Hope your day gets better.
I changed a lot of things. My diet (I'm vegan now), my meds (I came off them all one at a time under medical supervision) to see how I felt then slowly added back the ones that were actually helping. I rest a lot and until the ME hit me again I did go swimming once a week but that hasn't happened for months now.
Sorry, what is ME ? Yes you can have other illness with Fibro .
Thank you all for your support in answering my question. M. E. is Myalgeic Encephalytis (not sure of spelling) commonly known as chronic fatigue syndrome also, but much more than chronic fatigue. it is comforting to know that I am not alone in this although heartbreaking that so many also suffer. Hope you all have a peaceful night and sleep well ready to face the next day. xxx
Most recent study puts ME/CFS/FM in the same grouping under one new designation which is a disease not a disorder as many consider FM.
But if I mention it again, I will probably get banned! 
If you're interested, look up SEID and one of the above names.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Hi vajrayogin1.....you are not alone in your dilemma. .....I've been querying the same thing in my recent posts. .....you might like to read the various personal stories posted on my post 'How did your Fibro start' and 'Aaarrgh. ..is it a plane? Is it a train ? Etc...' . Emma (admin) posted lots of useful info relating to Fibro and ME on the latter one. Steve (fibro rocker) has kindly detailed his personal Fibro journey on my post ''How did your Fibro start'.......which you might like to read (hi steve!......just thinking you could probably do without posting it alll again....PS hope you can get the referrals you need/want). I also found the info on the UK NHS website about both conditions clear and useful (note ME is listed under the older name of Chronic Fatigue Syndrome).
Like you at times muscle and joint pain has predominated and at others it's been the Fatigue (with associated feelings of nausea, weakness and generally feeling very unwell). Would be interested to hear how you get on with the ME Consultant (didn't even know there was such a thing!). All best.
Cheers for that , every little helps..just been to get some bits from shops only around 300 metres away.. still out of breath an hour later, muscles trembling uncontrollably😕😕
Hope symptoms have eased for you Steve...and that the goodies from the shop were worth it.....you DID get some goodies right!?!? Hope you understand my humour!
Love the humour, always uplifting and as you know always needed and appreciated..😊😊
Hi I am being referred to
GP referral to: Dr Gavin Spickett, Consultant Clinical Immunologist who is part of the ME/CFS team for the North of Cumbria. I have read posts on how your fibro started, all encouraging to know that I am not alone, so sorry to hear of others pain. Hugs to all and I will let you know how I get on, waiting for the appointment to come in the post at present. x
Thanks for the info vajrayogin....All ammunition for when I talk to my own GP! Good luck for your appt when it comes.
unfortunately a lot of your symptoms are very similar to me .you can check out the full list on the hummingbird foundation for me website. you can access the site without having to login or purchase anything. although it can take quite some time to read all the information they have amassed. truly hope you dont have me . because i have had it for 25 years and drs mostly dont want to know.
Just a thought ... you say 'Dr's mostly don't want to know' but what is it you expect from them that they aren't giving you? There is no medicine cure, but there is a lot of information, advice widely available from charities and medical sites on how best to self manage the condition. .....whether we like it or not we, the sufferers, have to do the leg work daily in our own lives.....sometimes it can seem as if sufferers refuse to acknowledge/ accept this and so keep on berating doctors for being 'useless'......none of which helps anyone! Sometimes some illnesses require us to take strong personal individual control to manage them.....I would suggest that Fibro and CFS/ME fall into this category.....However hard that may be for some to accept I believe it is the only self empowering way forward.
Doctors don't want to know, as in: dismiss you and make you feel stupid, making it all up, lazy, hypercondriac. Also dismiss new symptoms/worries without considering whether they are something separate! My swollen ankles could be any number of things but barely looked at, for instance!
Sorry but your post comes across as angry and harsh when people are feeling particularly vulnerable. I have noticed sentences broken up through this anxiety. I'm sure you didn't mean to appear this way though. I'd also like to reassure you that this is also not meant harshly.
Soft hugs
Hi Sarah Jane. ..sorry you took my words in that way......I truly don't feel angry .... perhaps 'tough love' is a better way to describe my words rather than 'harsh'?.....sometimes we just have to accept uncomfortable facts/realities however unkind that may seem.... (don't shoot the messenger kind of thing) The need to help ourselves is well documented and why reject something which can bring such positive results.
From what you say you appear to have had an unsupportive response from your current doctors so, as often recommended on this site, perhaps it would be worth your while changing?
My question was addressed to the originator of the comment ie ALKT so perhaps best to leave it up to them to say what they themselves meant by it, if they wish ? I sincerely hope you find the medical support and empathy you seek. All best.
thank you for your reply. you are correct many people think i can be very abrupt .chronic pain and other symptoms make everything more difficult including long periods of trying to think straight. hugs also.
you have a fair point. but i think some doctors have so little time for individual appointments that they become impatient with people who have illnesses outside of their expertise.and unfortunately i have met some who have come across as being very dismissive.not what any ill person would find reassuring.
Hi ALKT. ....I think the GP system in the UK is close to breaking point in many areas........A 10 minute consultation slot puts a real time pressure on doctor and patient. ....I try to get my thoughts together before appointment and bring a prompt note with me to make sure I cover the essentials.....but even then 10 mins doesnt really allow anyone much leeway.......say 5 mins to listen to patient snd 5 mins to respond and decide what to do ? Times x number of patients in a surgery session......seeing a GP has become like a factory production line and I doubt many GPs relish the current system /situation either.....its not just patients who are disgruntled. For me the problem is much wider than individual unsympathetic doctors and that's where the word politics comes in! Like it or not we somehow have to work with doctors in this system....A tough call for folk feeling ill and needing a compassionate response.
Hi ALKT, Thank you for responding. Yes I have taken a look at the Humming Bird site I came across it when i put in a search for M.E. I am sorry you haven't had much luck with Drs, I will let you know how I get on with the consultant. Warm hugs. x
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