I have been suffering from CFS for the last four years and I have been struggling to cope with every day life. I feel irritable and upset when people do not understand how I feel. I once had a physio therapist tell me the pain is all in my head which made me fee awful. My pain is usually on my right hand side of the body that can move around. It's extreme muscle pain, like a burning sensation. Does any one also get similar symptoms.
Hello
Yes, all my symptoms are down the left side of my body, and all neurological - severe pain in my arm, shoulder, collarbone, pins and needles, numbness, pain in my jaw, eye, weakness in leg muscles. Some symptoms affect both sides, especially the lactic acid rushes in my muscles. Have you seen a neurologist? I saw one who calls it a software problem - it's the programming that has become jumbled, sending faulty messages from brain to nerve and back again. The fact that doctors have yet to work out why is not our problem! It might be good to get a good, informed GP and a consultant behind you who can boost your confidence and help when dealing with unprofessional therapists etc.
Best wishes. El
Hi El,
Thank you you for your reply I really appreciate your response. I have seen several physicians I.e. Neurologist, rheumatologist and physiotherapist. The symptoms have had an affect on me mentally and it has made me feel very low at times. I get all the symptoms that you have mentioned but mainly on my right hand side. I also sometimes find it difficult to swallow an easily bruise. Do you get sore areas in your muscle that hurts to touch?
I have been linked to a pain management team now because It has progressively gone worse. I'm taking combination of amitryptaline, gabapantin and painkillers to manage. My recent neurologist told me I have to recondition my body, as my body has become sensitive to anything which signals as pain in my brain.
Many thanks
Hello rose,
Your pain is real and what elibee said I have to agree with. Something to do with nerves signalling in the wrong way.
I suffer from painful legs, twitching in legs and a burning sensation intermittently. However I also suffer from parenthesia in the legs constantly. Doctors are not good and just say it will pass.
I know it's hard but try not to let the symptons overwhelm you because when it overwhelms me that's when I find it exacerbates the symptons.
I have been bathing in epsom salt which I find helps and also try to perform mind and body relaxation every day. ( just takes 10 minutes a day). I think our bodies are on high alert from our symptons that it becomes too tense and our pain either emotional or physical becomes too much. I know it's hard to break the cycle but if we even do one second a day I think we will both get better.
I have good and bad days where I just want to swear till the cows come home haha.
Can you try gentle exercise. Even a walk in the park once a day.
Do you take supplements? I take cold liver oil and co-enzymes. Not sure if it's working but worth a try ... Take a spoonful of manuka honey to boost immune too.
Don't give up 😄😄😄
Elle.x.
Blimey, that is a very poor neurologist! These sorts of comments infuriate me - you cannot 'recondition' your nerve pathways, it's biologically impossible! The signals will still fire off pain messages, you will become more and more distressed, and so your mental state suffers even more! I'm talking from my own experiences here, when I was in the early stages I just wanted to push through the pain to make it go away - it never did, and if ended up a weeping, hurting mess. Yes, my collarbones sometimes become very tender to touch, so sore they feel bruised even by the skin over them when I breath.
I think Elle's suggestions are all great - gentle stretching and short walks (speed does not matter), Epsom salt baths, these things work for me too. I'm on similar meds - a ton of gabapentin with duloxetine on top, plus cocodamol as required. It still hasn't quite controlled it (I'm just recovering from a four day crash,terrible pain). It is so psychologically hard living with this, waking up day after day to pain and illness. But you're not alone, and one thing that has been a real surprise to me is the number of people who have had the same experiences. Speaking to people who go 'yes, I get that too', however wacky the symptoms seem, is amazing, and helps me cope mentally. Do you know anyone else with CFS? There may be a support group in your area?
Hopefully you'll get much better help from the pain management team. You are not alone, remember that, even though I know how horribly lonely it can feel.
El x
Hi Elle,
Stress does exacerbates my symptoms. My muscles get tense and tightens up which makes it difficult to move. Because of the pain I don't feel like doing anything which does not help the cycle of pain. I need to make more efforts to do gentle exercise. I tried swimming but I think I overdid it at times which made my symptoms worse. I just need to find the right balance. I take high dose of calcium each day when I remember. Cod liver does not agree with me but I will give co-enzymes ago.
It does help knowing that I'm not the only one and that it's not all in my head as the the pain I feel is very real.
Many thanks.
xx
Rose,
The sad thing is ME can also result in fibromyalygia. Sore points on the body that causes muscle ache. Have you been diagnosed with that ? I have it too with parenthesia. (Pins and needles). Stay strong honey. We all have to. Try to make the mind happy. I know it sounds tripe but when we are happy even if it's just for a split second like "oh my husband brought ME toast in the morning" or " the sun is shining the Sky is blue" will uplift the mood longing than the split second and even a little bit is better than no bits.
doctors are like pick and mix. Some are curt and rude and some are genuinely "nice". I think they are all doing a job and they have the knowledge but the way they communicate to a patient is vvv important and some have lost the skill in this. So half the time I do not listen to the curt ones and just believe I will get better.
Sunny where I am. I hope it is for you too. Know it sounds a bit tripe but try to enjoy the sunshine today even if it means looking at the blue sky for one second 😄😄😄😄😄
Much love and fantastic sunny warm and glorious happy energy to rose and elliebee 😄😄😄😄
Lovely message, Rose, and totally spot on! Hope you have a wonderful day too
I meant Elle of course! Pea souper of a brain fog day...xxx
Thanks for your lovely messages. I had a little weep and some sleep. I can feel overwhelmed at times. I have recently been made redundant ,but I managed get another job within the month that I was let off. I was struggling with work but I have been forcing myself to keep up with a normal life and having a job but I'm scared that I wont be able to manage because I'm exerting myself too much just to keep up. This year has been positive and I'm lucky in soo many ways but it's my health that has been getting me down. I feel guilty because I know there is soo many other people who may be worse off than. I don't have a visible disability so people cannot tell how I'm feeling inside and it comes across that I'm complaining. Your right you can feel very lonely at times even though my partner is quiet supportive and very patient.
Many thanks xx
Hi Elle,
Your message was a lovely message and it made me smile. It does upset me and I think I'm jut having 'one of those days' where the pain builds up. I had a good cry and some sleep. I love your energy and will try and use it to have a happier day and look at the positives. I am not in any support groups and have been searching on the internet where I can speak to like minded people and get their views and whether there are others like me. Hopefully I will be meeting more people at the pain management sessions.
Thank you and I hope you have a lovely day too xx
Hello Rose,
I have one of those day every day. Hahaha. That's the beast in this illness. One minute I feel like I can conquer it and the next I feel like the whole world "pain" is on my shoulders. But through out this we just have to keep hoping it get better. I know it's hard but I try to keep my illness in the background of my mind rather than the forefront so I don't give it energy to grow. Again sounds tripe but that's how I cope with it.
Definitely go to pain management. Do everything in our power to minimise the discomfort. Even if it's a small bit or a big bit. Having said that my pins and needles are getting on my nerves abit today haha. Oh well got to laugh.
I find this site fantastic because you are right - people think it's in our heads and "pull your socks up" so it's good to talk to those who are suffering too because a sufferer to a sufferer truly understands what is going on with our bodies. And it is definitely not made up.
Let me know how the pain management goes. Love to hear that u are managing it.
Many hugs.
Elle x
Have you all been tested for autoimmune disease ? Such as hashimotos ? I was "diagnosed" with CFS years ago as all tests associated with symptoms came back normal so as ME/CFS is a diagnosis of elimination this is what Ihad told to go home and just live with it !! I did , not easy , I struggled with all the symptoms you all describe . The pain , the pins and needles , numbness, pain soreness in collar bone discomfort in jaw and ear ,difficulty swallowing , fatigue etc. 19 years later I have just been told no! I have not got CFS nor ever had it! I have been shouted at , called stupid, told everything is all in my head and I am just depressed. It is only recently that I told my GP I was not leaving the surgery until I had tests for autoantibodies done and to my astonishment she agreed to do them and also sent me for a thyroid ultrasound. The results confirmed Ihad hashimotos disease not CFS , my thyroid was shrunken and inflamed, the symptoms for ME/CFS and hashimotos are much the same . I am not 100% well but my life is not the nightmare it was for 19 years. This may not be the same for all of you perhaps you have been properly tested for this illness but as thyroid disease is one of the most under diagnosed diseases I felt I must add my story to the mix. I know I grasped at any straw that might help me get well again. Hope this helps at least to discuss it with your doctors. Good luck
Wow thanks Sylvia. I had thyroid tests and they came back negative. As in it was all ok. I also had thyroid ultra sound and that came back all okay. Is there a specific test for hashimotos ? Gosh maybe I have this ... What is the treatment ?
The doctor did give me pregabalin for my pins and needles but I am afraid they were rubbish so I just live with my condition. It does annoy me but I try to put it to the back of my mind ...
Hi Sylvia
yes, I have an underwcti be thyroid gland - I had swine flu in 09, then my thyroid gland began playing up six weeks later. Thyroxine kept it almost controlled (I had the odd day here and there where I was so fatigued it had to crawl about my house) but then had a terrible full blown whack of M.E symptoms in October 13 that have been getting progressively worse since. My thyroid levels still show up as normal at my routine tests, and I take thyroxine daily to control it. My parathyroid is also playing silly beggars, and my Vit D levels were undetectable when they started investigating the fatigue - now take high dose daily to maintain.
Haven 't been checked for any other autoimmune diseases though.
El x
Hi Sylvia- I don't know if I have had an autoantibodies test done but it's helpful to know. It's amazing how everyone has had so many tests and seen different specialists, but yet there is so much uncertainty on their diagnosis. The not knowing whether you have CFS, or it being something else itself is stressful. Sometimes knowing what you have can help with coming to terms with it and move on from there.
Has anyone suffered from any viral infections before all the symptoms started or it just happened overtime?
x
Yes rose I had a flu type virus which lasted about 3 months eventually went but left me with a sore throat and pain in jaw and ear . Then 4 months later I felt I had been hit by a truck. . Elle all my blood tests came back normal for years. The trouble is GP s seem to ask for the run of the mill tests and if your TSH is normal that's an end to it . Over the years I was told all the illnesses that could be connected to my symptoms had been done . I have just recently been told by my endo he had looked up all my medical records and was shocked to see I had never been tested for autoimmune antibodies, so you se when you are told by your doctors every test has been done it is not always the case. Ellebee, your full blown whack of ME /CFS symptoms could possibly be full blown hashimotos symptoms they are very much the same ! The blood tests you need are thyroid peroxidase antibody and thyroglobulin antibody . If you would like more information to see if this could be your illness go to " I am hashimoto disease, a letter" this describes it in full also lots of comments from sufferers. I am sorry to say there is no cure for autoimmune only treatment and ellebee the treatment is thyroxine ( T4) and triothyronanine( T3 ) so since you are on thyroxine it is probably helping with your symptoms. Getting the correct dose of T4 andT3 seems to be the difficulty ! Hope this helps some of you to do a bit of research on this disease and go to see your doctor armed with some info. Best wishes to you all Sylvia
Thanks, Sylvia, that's really good to know! Will follow up on the Hashimotos thing, definitely. Is a diagnosis of autoimmune disease different from that of M.E? I'm wondering if the symptoms are so closely aligned that M.E might also eventually be found to be autoimmune. Certainly I can trace my first significant problems to the weeks following a three week bout of very nasty swine flu. Thanks again for the info, Sylvia.
Hi ellebee, there are no tests at all for ME/CFS as you know only a conclusion after all other illnesses have been eliminated . When there is awful tiredness or fatigue as a symptom doctors mostly " diagnose" ME/CFS this usually satisfies the sufferer as this is what we want , an answer to our health problems . Hashimotos disease needs the specific blood tests to diagnose . If you have looked up" I am hashimotos a letter- for patients , family and friends" you will note a flu type virus seems to be the start of the illness but gives other causes , a trauma or a bad accident stress or habitual abuse. Rose you say don't know if you have been tested for antibodies like myself you probably didn't know there was such an illness or tests for it. You need to bring it up with your GP forewarned is forearmed!! Any one reading this and coincidering it as a possibility you need to see an endocrinoigist or thyroid specialist . Good luck Sylvia