So, have fibromyalgia and now Dr has said I have CFS.
Anyone else have experience with CFS with Fibro ?
I'm just exhausted with it all
Dr said just accept it and get in with my life.
Ok thanks ha ha ha ha
Chronic Fatigue syndrome : So, have... - Fibromyalgia Acti...
Chronic Fatigue syndrome
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Mrdiagnosis
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isn’t it the same thing? Or don’t they come under the same umbrella kinda?!
They are two different things . You can have both separately. Or both together. I think 43% (can't remember actually %) of people with fibromyalgia have chronic fatigue syndrome.
Fibro has pain with it
Chronic Fatigue doesn't normally.
It’s odd because I have extreme pain and extreme fatigue but only been diagnosed with Fibro. It confuses the **** out of me all this Fibro, CFS, ME thingys! 😂
How nice of your doctor to leave you to it 🙄.
Cfs can cause fatigue, but can also cause dizziness in some, I am one of them, I have had multiple falls, light sensitive , balance problems, all thanks to cfs.
Scooterz2 , it’s a separate problem from fm, but it’s quite common with people who have fm, the only way to deal with it, is to pace yourself, give in when you need a nap, its pointless trying to fight it, just makes the brain fog worse, and you feel crap.
and if you have to work with it, mahoosive hugs, to any one that does.
Hi Blue-52 ... Yes me too ...I broke my toe last month just because I lost my balance and had a foggy head. I'm 56 and feel like I'm 92 ... It's rubbish isn't it .
Absolutely, I have a nice shiny titanium plate, holding my elbow together, oh how fm just keeps giving, grrrr, sorry about your toe, ouchy.
Oooh that sounds painful. I have a titanium bolt for a hip lol what are we like .
It does just keep giving doesn't it . And done get me on benefits and how you have to continually explain yourself. Erm ....no my hip bone isn't going to grow back ....not there isn't a cure for fibromyalgia or CFs ....so why do I have to tell you this every blinking time ...
Me too that's why I asked the question.
I guess chronic pain can cause fatigue... I know it does because I have it .
But people without fibromyalgia can still have chronic fatigue.
So I guess it's a case of when the fibromyalgia isn't causing too much pain ... because I'm sure like me you have good and bad days ....your still fatigued.
Whatever it is is rubbish he he he
Typical!
If you do have CFS and Fibromyalgia a knowledgeable GP would know getting on with your life without proper support and medical treatments are impossible.
Fibromyalgia often requires consistent gentle exercise daily as part of the way to reduce pain.
CFS/ M.E , unlike chronic Fatigue that can be experienced as part of another illness, including Fibromyalgia, often gets triggered or flares up if you exercise or are active even at the gentlest level.
Getting the right chronic fatigue and chronic pain support is vital , not just occasionally but regularly.
If you have a chronic pain condition, or a CFS/ M.E condition your GP should be refering you for assessment by the Chronic Pain or CFS clinic to take part in a Chronic Iain Management course.
At the clinic , you get an initial assessment by members of three Departments whom are intrinsic to helping you control your lifetime condition , a Chronic Pain Consultant or CFS/ M,E Senior , a Clinical Psychologist, and a Senior Chronic Pain/ Rheumatology Physiotherapist. They are professionals with training to understand what you experience and of the ways to help you manage it. The first meeting is informal and they are kind and try to reduce the stress of it for you, you can take people in with you for support and move about or lie down as you chat if you are in pain. After assessment the confirm with you what you want to achieve and if you are willing to take part in a 12 week group based course.
The course involves learning pacing and pain control techniques, CBT , Mindfulness and Relaxation, group lessons, group talking sessions and important guided sessions teaching you how to pace physical exercise so that you can reduce your pain and maintain muscle without triggering the CFS.
And , of course , with post assessment they can help more with ongoing physio , hydrotherapy, NHS funded complementary therapies, ongoing counselling and appropriate pain medication if you require it.
They are also important in helping you to understand nutrition and a referral to an NHS Dietitian is often important to help you discover if you do have any intolerances that may account for some of your symptoms or not. They also help you to create a diet that helps improve your fatigue.
They guide you properly through an Elimination Diet rather than you just giving up whole food groups without testing the need to do so. Afterwards they support you in the right and slow way to reintroduce foods to establish if you need to give up certain things entirely or if you can and should healthily include things like dairy, gluten or wheat etc. at a suitable amount to improve your overall health and energy.
They can also order other tests that Doctors and Specialists often don't bother to do to ensure there aren't any other gastrointestinal conditions that could affect you that have not been ruled out.
If that is your GPs attitude they are not suitable to be the Primary Care Provider for someone with your long term health conditions.
They are both ignorant of the ongoing needs with these conditions and the NHS care availability in your local area or Trust.
If you have another GP at your Practice , I'd suggest requesting a double appointment with them to discuss your diagnosis and ask for the referrals you are entitled to.
Take care , I know how hard it can be , my daughter and I both have EDS, Chronic Dysautonomia, CRPS and Fibromyalgia, the difference is I get chronic Fatigue as a symptom of my other health issues but she also has CFS/ M.E.
I have seen were I can improve my symptoms with daily gentle exercise , this can often trigger her CFS and make the conditions worse.
People with CFS/ M.E cannot always prevent or improve an attack of Fatigue , and whereby a person with chronic Fatigue as part of another health issue help to treat it by activity ( even though this can be hard and painful at first) someone with CFS. M.E will make their condition worse using the same technique.
I'm so glad I don't have CFS/ M.E .
My daughter benefitted 100% by doing the NHS intensive course alongside her medication. She knows how to listen to her body and can pace herself much better than before. She is not ready to return to work but she is able to do some activity each day now and some exercise in her comfort zone, and so her comfort zone is expanding.
She can see light at the end of the tunnel and her goal is to be able to manage to do some form of part time work by the end of the year.
Hope you find the support you need soon, don't be afraid to ask for help from family and friends to help advocate on your behalf on getting it , as you will know it's so hard to get help when you are too tired to cope with the stressful conversations we sadly need to have to get something done , take care , Bee
Yes like you and your daughter I have numerous diagnosis of ‘overt’/ ‘real’ diseases ( type 3c diabetes, hypothyroidism, neck vertebrae with easy disalignment…) and ‘syndromes’ ( fibromyalgia and dysautonomia as ‘postural hypotension’)and now nearly 5 years of Long Covid. It has always been difficult to unpick which causes which symptom: the all over body pain and exhaustion in this post’s context…I have to a large extent given up on such diagnoses ( you only have to read US posts on some Reddit subgroups to see the shopping list of diagnoses, but no ‘cures’) thus I have no CFS/ME diagnosis, though meet the criteria. I tend to seek tips/ methods to limit the disabilitating aspect of them, for example concerned about deconditioning I started swimming 5x a week 21 months ago. I also keep ferritin, vit D, B12 and folate well into range( an aid for hypothyroidism, but you might well have seen how important these can be with infections like me Covid19). I can quite believe many of my ailments are interlinked and I do read many research papers: for eg recent Indian ones show lack of the active thyroid hormone t3 results in very early ‘coat hanger’/ leg pain due to its need in creation/ maintenance of collagen etc in tendons and cartilage ( is there a link here to EDS, is thought to be one to fibromyalgia?). I personally have found medics totally uninterested in the ‘syndrome’ side of my health…there are no pain clinics where I live, thus DIY coping methods are best, and get those around you to understand and help!
Thanks for the reply. I do have my own ideas about fibromyalgia and it's cause . I had an accident at work and the immense stress and mental health issues it caused due to various factors of having to fight the company to take accountability for it and support me I feel that is the cause of my immune system and mental health which in turn has bought on fibromyalgia and CFS .
Years of abuse and lies regarding the trauma the accident caused me took me to a very dark place so I feel that my brain is making me feel this pain because it just can't cope with my thoughts feelings and emotions anymore.
Your immune system goes into hyperdrive and makes you feel pain to stop your brain dealing with issues it can't cope with.
It's the only thing I can pin point as to when this all started.
That's just my own personal experience and thought.
Yes, there are lots of likely reasons why we get such ailments. I found a book by Dr. Monty Lyman called ‘ The Painful Truth’, which is a paperback you can pick up cheaply second hand, a very interesting read to help towards explaining the pain/ tiredness, though he admits fibromyalgia etc are still ‘difficult’ to explain fully.
Ehlers Danlos Syndromes are genetic conditions which involve dysfunction in collagen production. Most people ( including doctors) only think about joint dislocations and very stretchy skin if they know anything at all. The truth is actually different , connective tissue is affected throughout the body causes most of the other syndromes to develop, joints and bones can subluxate ( partially dislocate in and out) without leaving an X-ray able sign, the constant sudden pain and " fight or flight" finally causes early signs of Fibromyalgia because the body is always expecting pain or injury of some sort. EDS affected me all of my life and is the root cause of all of my other health issues, which made it very ironic that it was the last diagnosis to be confirmed and added to my medical records after it took more than a decade and a half to finally get a doctor properly assess me and send my family for genetics testing. My 50th birthday gift two years after the first genetics interview was my final diagnosis of Classic Like EDS. Luckily , my daughter's could be tested at the same time one has Classic EDS , the other hEDS, at least they won't have to go through a lifetime of misdiagnosis and mistreatment now that I've learned the ropes of being a knowledgeable patient.
We all had the "unholy trinity" of Fibromyalgia, Chronic Dysautonomia ( both autonomic and cardiovascular conditions) and MCAS.
I have just about every type of Migraine variant and Cluster Headaches.
My youngest daughter also has vasospastic angina as well as the CFS. M.E.
I also had undiagnosed Functional B12 and Folate Deficiencies which had caused recurring Anaemia and Vitamin D deficiency for a decade when I look back at my notes. These caused permanent neurological changes and symptoms so I need injections and infusions to prevent the loss of mobility and the parkinsonism it causes for me.
It was very annoying to think that I'd eaten healthily all of my life but doctors overlooked my symptoms and blamed my blood tests on dehydration or because they would not believe I didn't have an eating disorder because I was very underweight.
The weight issue they should have realised was part of the deficiency, but most doctors , including Consultants know very little about nutritional illnesses and even less about exercise.
Nutrient Insufficiencies are definitely intrinsic in the increase of symptoms in all of the conditions including Fibromyalgia , getting those improved helps , but as we know these conditions have " no cures".
We can feel like we are doing well if we can reduce how often issues flare and we can stay 80% pain managed while having a balanced quality of life (as pain free is a goal we should learn to accept as unrealistic).
It's really important to get the nutrients tests and full blood count done by your GP at least every 12 months, or every 6 months if an issue is discovered
I also discovered late that I had Familial Hypercholesterolemia and I have Pancreatic Enzyme Insufficiency so I get prescribed enzyme therapy for that. Both of these conditions are genetic.
My parents certainly gave me a lot of gifts!!!!
My Dysautonomia conditions and certain Migraines are the most disabling . I have POTs, but also Sinus Node Reentrant Tachycardia, and they have caused the development of other arrhythmias including Atrial Fibrillation and Vasospasms. "Standing is my Cardio" is the slogan of the Dysautonomia Society and it's true. I need walking sticks to prevent fainting and falls when I stand.
Maintaining muscle and keeping gently active is important to delay the time before I may need a wheelchair.
I find aqua exercises , hydrotherapy and swimming very useful for that.
It’s only recently that I researched the full range of EDS, though I had close friends ( mother and daughter) with what I now assume is ’classic’ , but seeing the range does make me wonder if there is a link for me there too. My brother has ankylosing spondylitits for eg. My dysautonomia first started, intermittently in my 20s, but is, 40+ years later with Long Covid, now permanent…I can only stand for a few minutes till I faint as BP plummets and HR rockets to compensate, and do need a wheelchair at times. Sounds a bit odd, or inappropriate, but I do find these links between diseases fascinating, and interesting, how they have subtle manifestations in different individuals. I have pancreatic insufficiency ( along with type 3c diabetes) as a result of septic shock/ acute pancreatitis following a routine bile duct procedure going ‘wrong’, but then perhaps that was my ‘weak point’…. I’m very sorry to hear your daughter has your symptoms and hope an early awareness and diagnosis works to her advantage.
My pancreatic insufficiency began about five years after having chronic pancreatitis which developed after I had to have my gall bladder removed at 38 , despite being the complete opposite in build etc to apparently have a gall bladder problem.After years of research I can now see that the fall bladder issue was linked to the familial Hypercholesterolemia and poor emptying of my gall bladder because of the way EDS can cause poor elasticity in all of your tubes and vessels.
I also had to have a full hysterectomy at 40 because of horrendous periods and bleeding in other areas of the body during periods. I had the neurological version of endometriosis, Adenomyosis, when uterine cells have attached to the nerves . The pain and bleeding was unbelievable, eventually the periods began to flare up the pancreas. I basically told the Consultant I wasn't willing to lose other body parts just to keep hold of my ovaries.
Yet, despite all the symptoms and the amount of times it was suggested to me that I could have EDS nobody would take on the cost of doing the tests and most rheumatologists would just say pull out your cheeks and say it wasn't EDS if they didn't stretch as far as they do in the "worst of" pictures, they diagnosed Severe General Joint Hyper mobility Syndrome instead, which plagued me as you can't get the right attention or care when you say you have that as you do for EDS , even though people with GJHS can have symptoms as bad as those with hEDS.
My Dysautonomia was originally misdiagnosed from birth when I had my first set of convulsions, at 7 they decided it was Juvenile Epilepsy. I can forgive the mistakes way back then , nobody really knew about EDS and Dysautonomia, what I can't forgive is the twenty years of misdiagnosis and poor care I received more recently.
It has only been by my own research and learning how to approach doctors with firm requests for tests that I finally got things properly diagnosed and written on my records.
The only positive in the situation is that at least my two daughter's won't have to go through the same hell as me, making sure they were in a better position , it's the only thing that kept me fighting really.
You health synopsis is both complex and interesting, I hope some doctors have learnt from the ‘total’ picture of how one ailment links to another, but sadly I doubt it as Western medicine compartmentises gastroenterology, endocrinology, gynaecology etc etc. I was told I couldn’t possibly have POTS, though met the diagnosis stats. before the tilt table test, as I was too old, so even separating health into paediatrics and geriatrics can be blinkered! Wishing you and your family the best of health.
Well said 🙂
Hi, my son was diagnosed with CFS/ME when he was 15 then Fibromyalgia at 21. He is now 30, he has tried all the medication his GP knows of but since his original brilliant GP’s have left over the years he gets no support from the new ones. The last time he went to see one she told him to see another of her colleagues if he wasn’t satisfied. His mental health has suffered terribly over the years due to the chronic pain & exhaustion. I wish you well & I hope for a miracle for all Fibro/CFS sufferers. X
It suddenly hits you and you have lay down .I used to be like it a lot in the early days but now I seem to be ok.Some doctors are so insensitive.You would of thought he would of given you helpful advice like pacing yourself,getting to know what your body will tolerate,learning to rest.I am not much at good advice though as I like to pack everything in at a short time and then suffer afterwards
I had cfs/me first then fibromyalgia came nearly 10 years later. I know many in our community have both. My doctor tends to treat individual symptoms & gives little help with the overall condition. I find help from groups such as this comforting. The ME Association is also worth joining & has a great helpline. If you are lucky you might have specialist help from a clinic in your region so worthwhile pursuing a referral. I have nothing where I live but fantastic support from my lovely friends and family.Take care x
Hi, I am very confused about the difference between the three conditions of Fibromyalgia, CFS and ME. I have been researching them and there seems to be so much crossover. Personally I decided to see them as part of one overall condition. My rheumatology consultant diagnosed me with Fybromyalgia, but have veered towards a self diagnosis of CFS/ME.
I agree that pacing helps. I was lucky enough to be able to reduce my hours at work, for example, and to get a more suitable timetable. Obviously diet is also important.
I don't think your GP's response is acceptable. I don't know what resources are available in England (I am in central/west Scotland - very few, if any resources, as far as I can tell ). It is probably worth trying to find out. There are some support groups online, with meetings in your local area, possibly.
ME and CFS are two different names used for the same condition by medical professionals, which is why you usually write the abbreviation of CFS/M.E when you discuss them.Fibromyalgia is a different condition even if there are many similarities in the symptoms.
If you are diagnosed with Fibromyalgia you will often not be diagnosed with CFS/M.E . The assumption being that you have chronic Fatigue as one of your symptoms of Fibromyalgia or other health conditions so you are not classified as having CFS/M.E unless you exhibit severe Fatigue flares when trying Fibromyalgia recommended activity levels.
It is more often the case that a person with CFS/M.E can develop Fibromyalgia after a number of years of suffering the flares and physical stress of CFS/M.E.
The symptoms of Fibromyalgia pain begin to occur.
Often people with Fibromyalgia can maintain a job and a higher level of well paced activity and when their Fibromyalgia is well managed they will experience less Fatigue even when they can increase their activity carefully.
People with CFS/M.E usually experience the symptoms despite good pacing or stress avoidance , episodes can come in waves , or flares, often without any external stimuli or change in behaviour to cause it.
People with CFS/M.E cannot try to power through a flare and generally cannot use gentle exercise to reduce pain or fatigue symptoms, if they do the Fatigue is the symptom that will become the most severe.
It can reduce their chances of continuing educational courses or working even on a part time basis.
It's why it's often good to get a second opinion from a Rheumatologist or Pain Specialist with real knowledge of both Fibromyalgia and CFS/M.E to be reassessed if you have either CFS/M.E or Fibro, to ensure you have not developed another condition , because although the treatment and self care options are very similar if you aren't considering the different needs of both health issues it can increase the flare ups you have.
I had chronic fatigue syndrome 30+ years ago but no dr thought to tell me any diagnosis. It gradually got better after 5 years with no help from any medical professional.Last 2 years it came back. Now diagnosed with CFS, osteoarthritis, inflammatory arthritis, central sensitization syndrome and fibromyalgia.
And I am still on the waiting list for the pain clinic.
I would suggest you try to change your gp in the surgery if you can. Whilst I believe a lot of help comes from ourselves, finding very slowly and carefully how to pace ourselves, to listen to our own bodies it remains essential to have some medical back up.
Some health centres\dr surgeries have a self referral system, might be worth checking if you can do so.
Above all, do take care of yourself and be confident many people, especially on here, absolutely believe you and support you.
hi I have had me/cfs for a number of year’s fatigue being the main symptom but also pain not strong pain usually different areas of my body and the usual symptoms brain fog etc
In September last year I had excruciating pain in my leg and hip went to drs and I’ve got osteoarthritis in my hip not only that but over the previous months my pain had got a lot worse joints etc so the dr told me I had fibromyalgia and I said him I was told you cannot have both together and he said yes that’s because a lot of symptoms overlap so I have got both he took me off fluoxetine and put me on duloxetine which is better for helping with brain fog so for me I have both I hope this helps you 🙂
Hello Yep I have and suffer with both however I was told I had M.E first and then a few years later Fibromyalgia.
I realised these go hand in hand and it's common to have both sadly 😥
Yes you will feel exhausted all the time huni the pain we suffer exhausts us.
I have had them 28 years now so if you ever need to rant,ask anything I will try and help.
Take care
Sarah
Thanks Sarah. Appreciate your message and support x
Yes I have CFS was diagnosed at the same time as fibro diagnosis. I think it is the body's way of coping with pain it wants you to slow down a bit and sleep. It goes beyond tiredness tho it can be complete exhaustion like you have ran 2 marathons within the same day. I can't work because sometimes I just sleep all day, just have no choice.
I used to be cabin crew and jet lag was awful but it doesn't come close to the fatigue I feel now .
Hi I was Diagnosed, was Fibromyalgia first, and after constant complaining to the Doctor about the fatigue. He sent me to the fatigue clinic and they diagnosed chronic fatigue Syndrome. But after looking into it, I realised that I had chronic fatigue all my life, since I had Glandular fever at 14 now in my 60s I'm in a wheelchair out of the house as I can only walk a few steps with out bringing on post exertion malays, P. E.M.
take care I know what it's like 👍 😊
Hey I also had glandular fever and believe this was the start of my problems too xx
I get PEM too . I have to be really careful about what I do otherwise I'm just unable to do anything at all.
Hello I have both, lucky me.
I believe from what my GP says is that the CFS is the tiredness and fibromyalgia is the pain in the body. Both combined is a challenge! I was put onto nortryptaline to help me cope. I also have other conditions and on lots of meds 😬
When I was a teenager I was very ill and had glandular fever, hepatitis, and spleen problems. Also a car accident. I believe all of this triggered my fibro and cfs x
I have severe RA & CFS/ME ( which often occur together). I live in the US and have good medical insurance.
I am treated for the RA by 2 huge University Medical complexes. Both famous complexes couldn't care less about autoimmune diseases- they offer no treatment team or support plan- just bloodwork, meds, and in & out (6 month) visits.
I had to ask for PT & JAK specialty med, w/the help of kind PharmD. Neither huge University system has a doctor on staff that treats CFS/ME!
I recently added LDN to my meds; which seems to be helping the horrendous fatigue. You may want to look into LDN; it is an approved prescription med here in the USA.
What is LDN I'm in the UK . Might help to not use abbreviations .
LDN is Low Dose Naltrexone.
Thank you. Things have different trade names in different countries so appreciate your reply
LDN if I am right in saying is not approved by the NHS in the UK. I think it can be purchased privately. Maybe type it in to the search bar on here, pretty certain a few others are using it. I strongly suggest researching carefully the prospect of using any unlicensed medication. I cant stress this point enough.
You can do a LDN search right here on HU & also Google it, as a start.
I have been diagnosed with both.
I was diagnosed with CFS 20 years ago and only this year been told I have fibro too, so the other way around from you. I think I had fibro a lot longer, but only the last year or two it got unbearable and doctor finally said it was fibro. I've have seen physiotherapists and had programmes of treatment over the years for CFS, but basically the advice is to listen to your body, don't push yourself too far but pace yourself. I do gentle stretches which I learned from the physios, and seated yoga, though I can't do it every day. Most days I can only manage to walk in the house, and maybe down the garden a couple of times. I cannot stress enough not to push yourself - if you start to feel even a little over-fatigued or it starts to be a little difficult to keep going, stop. If you have a good day, don't get carried away and do more than usual. It can take a long time to rest and get back to where you were, so it's not worth it. There can be a delayed reaction so you don't realise how much you'ver overdone it till the next day or the day after. I made so many mistakes in my first few years and ended up worse than I probably would have been.
Also CFS tiredness is different from sleepy tiredness, it's more like a heaviness where your limbs weigh a lot more, and it can feel like walking through treacle. If that happens, rest as much as you can even if you are not sleepy and want to keep doing things. Listen to taped books or watch TV if you can manage to. I am not light sensitive as much now, but I used to be very light sensitive and if you develop that, sunglasses even indoors are a big help to rest your eyes.
Your doctor really should refer you to a specialist for a diagnosis and so that you can learn about the condition and what to do/not do. I don't think there are many clinics specifically for treating CFS/ME, but I did go to one in Camden, London, so I know they exist. The treatment is always about managing the condition, pacing yourself etc, as there is no medication or anything else.
I did also change my diet which didn't help the CFS really, but I had developed a lot of intolerances and sensisitivities, so that might be something to look at.
Yes I have both. The suffering depends on how severe each one is. Doctors can sound unfeeling at times. I find that taking medication for pain is a must. I also sometimes use Rescue Remedy to help stress. This complementary supplement seems safe and obtainable at Boots and Holland and Barratt. Of course daily living is still so hard, some days unbearable
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