Helloooo...I've been suffering so bad, worse than ever. My tiredness got so bad that if I over done things on a good day, I was in bed for nearly a week after, the first of the days I couldn't move. Its total exhaustion. I just lie in bed like a cabbage. My nerves go bonkers, my eyes don't want to open if its too light, my pain is through the roof, I have no bladder control... List goes on.
Anyway.....my doctor informs me I have me/CFS as well as fibro. I looked it up on the net and there are sites saying they are 2 different illnesses and other sites saying its the same illness?????? Just got worse. I'm waiting to see a CFS specialist. Does anyone have any ideas? I'm intrigued to know.
Becky
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miss_boo
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There are many similarities between Fibro/CFS/ME and because of this it can be difficult to make the right call. I cannot give you all the inns and outs but I know the guys will be along with definitive answers..
How are you doing at the moment? Are you enjoying the better weather?
The warmer weather absolutely zonked me out, makes my skin buzz with tingling nerves too, so hid in my room lol. Its a bugger because I can't blow the electric fan on me cause it starts my trigeminal neuralgia off lol, I'm about ready for the knackers yard! But today is super, just died my hair pink! Will be worth the paying for it later, yippeeeeee x
I developed cfs 20 years ago I couldn't understand that diagnosis as I was suffering mostly from a barrage of neurological symptoms I did not have constant fatigue that a lot of people suffer from. At that time my husbands aunt had cfs and could barely walk ,which perplexed me. The tiredness I suffered was mainly my muscles were fatigued if I did too much and I had a tremendous weight on my body .When I phoned help line I was advised 50% of people only have neuro symtoms .This indeed a very trying condition.
sorry to here you feel so bad I can def sympathise I suffer from both I have recently had the worse flare I have had in years It started in the back of my head like a pressure headache then just snowballed from there chronic headaches, lethargy, muscle stiffening in my trunk legs shaking, vibrating sensations ,when walking I feel as if I carry an elephant on my back, sensitive ears nausea the list is endless, strange numbing and crawling all over, last night my face and head were totally numb , I am currently trying beta blockers which help the vibrations slightly but nothing helps the rest ,Were are you located I have continually asked my doc to refer me to a specialist but have been told my bloods are normal. I was refredd to a reumatologist 9 years ago I wrote all the symptoms down (33) and he told me there is no other illness that has so many symptoms I also had a lumber puncture 20 years ago to rule out MS
I had my m.s tests last December. I looked on a couple of m.s sites and they have all these symptoms on there. That crawly feeling is horrible. Like ants...if u hear a loud noise does it make u buzz and feel like ur gonna collapse? Its so unfair all this, its gets every part of our body. And yet they don't help us. My doctor blames most things on medication. Its a load of rubbish. I know my body. Last week I told him I was struggling to breath, like I was not taking in enough air, he said it was hay fever lol. It so isn't. I fainted a few months ago and had to go to hospital with concussion... I was a right mess, I looked like the elephant man! I broke my nose and all sorts. Any way, the nurse put a thing on my finger that reads ur heart on a monitor, she said straight away that my oxygen levels were real low, that's probably what made me pass out. Yet my doctor won't have any of it. Unbelievable xx
sorry to here you suffer so much I have really sensitive ears at the moment the least noise will make me jump out of my skin a fire engine went by the other day and I thought I was going to collapse with the noise, As for reading up on MS there are loads of conditions with the same symptoms you will have your self round the bend, I remember years ago when I first started all these strange symptoms I went to my doc with trickling sensations on my face , then my mouth started going numb as if I had had a dental injection, sent me to dentist then I started having strange sensations in my eyes as if I had put eye drops in but couldn't clear it away by this time I was at wits end, trip to doc yet again and he says right you are working yourself up and letting your imagination run riot ok I am going to assure you you don't have MS I will send you for a lumber puncture, well you could have knocked me down with a feather as I didn't even know what symptoms were for MS. I then started reading up on it and convinced myself I had it , the mind is very powerful thing. 9 years ago i was sent to a rhumo but was sent packing again I think a llot of doctors still think its phsycological even although they don't say that to you .
I was told that as well at the start but I do not believe that. I think it is part of the syndrome I suffer from numbness at times all over it comes and goes I do believe if your are anxious about it it does exaggerate the symtoms
I agree I have most of the numbness and tingling in my feet and calves also in my hands. The numbness in my lips and face I feel is a reaction to what ever the
He'll is going on
sorry bout that
It can be extremely confusing hang in there your not
Alone! xxxoox
From what I understand both share roughly the same symptoms. except that in Fibro the pain is dominant. Whereas in CFS it is the fatigue that is worse. Also the tender point test only works for fibro and not CFS.
CFS seems to be triggered by a virus. Fibro by a trauma.
Some doctors think that they are the same thing, others dont.
I think I have got this right but if would like to check it out there is a lot on the net about it.
Jut type in` what is the difference between Fibomyalgia and CFS.`
I definitely have fibro, I have dreadful pain, especially in certain areas, shoulders, wrists, back, groin/hips....I was diagnosed with this 7 years ago. At the time I got it, I got the flu real bad. And things went down hill from then.
The me symptoms I'm having now and come on real bad over the last 2 years. Its real hard. Especially if I've got both. Gonna have to grin and bare it ....thanx for replying
Having both I worry less about what is causing the symptoms than getting the right treatment for whatever the doctors want them labelled as. FMS or ME/CFS a tangled web where things that work for some others cannot tolerate it's a personal search for whatever improves the worst symptoms at the time.
All the best in your search for better control of the symptoms
I am so sorry to read that you also have ME/CFS to go with your Fibro! It must really make life and doing things very difficult for you and I sympathise with all of my heart.
There are big similarities between the two as others have said, and again, Fibro is mainly pain related. I can imagine anyone who is constantly in pain feeling drained and exhausted as a result? However, I am not a doctor so I cannot say if the two are medically connected by this link? Or are medically exclusive?
I want to wish you all the best of luck and I genuinely hope that you can find some resolution and relief to these issues.
So sorry to hear you are going through what sounds like a Flare-up with the Fibro! & such a difficult time of it!
I have suffered, diagnosed with ME/CFS over 30 years ago, then diagnosed with Fibro approx 10 years ago! It is so difficult to separate the 3 syndromes but they are all of the same "Family" I have been led to believe! When I saw a Specialised who Researches all of the three ME/CFS & Fibro!
I know with Fibro it is more chronic pain related! ME/CFS is the chronic fatigue part of it. I can totally empathise/sympathise with you! I slept for 30 hours solid on the weekend due to ME/CFS & woke still feeling exhausted! This set off a flare-up of my Fibro as being in bed for such a long period of time in 1 position makes us even more stiff & in worse pain, needing extra analgesic pain relief!
I must admit after all these years I find it difficult to differentiate between all of the 3 Diagnosis"s!
I have been in a extremely bad flare-up for over 2 1/2 years & have been totally "House-bound!" unable to go out @ all! I"m unable to drive myself any more.
My husband had to finish work to become my "Full time Carer" approx 7 years ago, I find the loss of my independence really difficult to cope with, as he was only 46 yrs old when he gave up work to care for me & often find myself feeling like a burden to him, although he assures me I am not! I was furiously independent before this horrendous illness "Stole my Life!", thats what it feels like to me!
I understand what you mean by it affecting your "nerves", I had a Nervous Breakdown after severe depression 7 years ago, this is when hubby was advised to finish work as totally unable to care for myself & have 3 sons too! Our eldest son also suffers from ME/ CFS & Fibro, he is just 30 years old & had to finish University in his 3rd & final year as he became so ill, he has to rely upon a Wheelchair but has other very Serious Syndromes & Dystrophies that affect his mobility!
I hav"nt long been discharged from hospital with Chronic Pneumonia & Septicaemia! This happened to me in 2012 when I was rushed into Intensive Care Unit with Pneumonia, Septicaemia, Sepsis, Respiratory Failure & was on Life Support Machine as my Organs started to shut down! I spent over a month in hospital then &very fortunate to have survived! Although I have a very rare Genetic, progressive, incurable Syndrome that causes my frequent attacks of Pneumonia ect, not related to Fibro!
I sincerely hope you find out the answers you are searching for when you see the Specialist? It is just my opinion but they are only "Labels", we still have to suffer the consequences of ME/CFS or Fibro, none of which are easy to try & deal with!
I wish you luck with your Appointment & hope you start to feel an improvement soon?
My heart goes out to you but @ least we have this Wonderful Site to "Vent" our feelings! I am so grateful to this Site for all the kindness & support shown to me since I became a member! @ least I have someone to talk to who empathises & understands me, keeping me in touch with the "Out-side World!" I have also been blessed in making some really sincere supportive friends, since joining this Fantastic Forum!
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Your are in my thoughts & prayers Becky & Pray things pick-up for you asap!
Sending you positive healing energies you way & just take each day as it comes. I"m sure you"ll get through this bad patch with the help & support of the many wonderful members!
Sorry you are suffering this way. From what I have read up on CFS & fibro are separate illnesses that usually go hand in hand. It's possible to have both conditions.
Sometimes I feel it is better to let the doctors worry about what the diagnosis is and concentrate on things that improve your illness.
I swear by floradix from Holland and Barrett with them I have slightly more energy and don't need to nap during the day. They give me more good days
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