I've had cfs for 25yrs looking for information

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Hi  my name is Angela I've had cfs for 25yrs at the moment I'm having a very bad relapse i would  like to no if anyone has the weakness in your head my brain stem has been weakened so my nerves system is all over the place my. Body shakes inside pain deep in the back of my head been told that is coming from my brain stem have poor concentration and cry a lot it would be helpful if any one could enlighten me thanks 

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  • Posted

    I can't help I'm afraid. I've had it for 10 years and I don't have the symptoms you mention but I'd like to see if you get any good answers.

     

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    • Posted

      Thank u i think it is something else thats wrong but my GP said its not had all the brain scans lumber puncture bloods etc but nothing showed up 
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      Yes its awful my  last relapse was 3yrs  ago and was in hospital for tests for ms but all came back normal i do have good times and can go out and do things but this seems the worst time ever 
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      I really hope it doesn't last long! It's hard knowing what triggers relapse isn't it. I'm always wondering what I've done wrong but sometimes I think it's nothing I've done, it just happens.
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  • Posted

    Hi Angela,

    I just wanted to let you know there is an FDA aproved study just finished in the U.S called Synergy, it is going to be the first treatment for CFS. Please research it.

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  • Posted

    so sorry you have to bear this pain ... have you tried any kind of (very gentle) massage / cranio sacral treatment for your neck/skull? It often helps a lot with pain. 
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    • Posted

      Hi over the yrs I've tried most things massages acupuncture  but I've very sensitive to medication  they just make me worse
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    Yes, medication is tricky with a lot of us ...
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      I have a lot of other sytoms get hot and cold  upset stomachs body shaking inside but the worst is my head very upsetting and very worried
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    • Posted

      Hi Angela I have talked about this before but just want to add hashimoto disease and ME/CFS have more or less the same symptoms. The shakes in your body in hashi call them inner tremors I ve had them for 20 years, the body too hot and other times cold when everyone else feels normal , another hashi symptom, have you got a low basal temperature? Take your temperature on waking then every 3hours for a few days is it a few degrees lower than normal ( 37 ) 98:6 a glass Mercury thermometer is more accurate. You say walking around in a trance foggy brain?? Lack of concentration? Hashi! Yes you cry ,of course you do ,anxiety will cause this not just depression, and of course you're anxious constant head pain has the doctor missed something( tumor cancer am I going to get even worse is it terminal)! As I have said before just because GP s doctors tell you every test has been done it is not always the case . with autoimmune thyroiditis the  TSH  T4  T3 blood tests will come back normal but for some reason GP s fail to request peroxidase and thyroglobulin antibodies tests . I just felt I had to put my view point down in the hope that it might just help people suffering with this horrible dibillitating illness . I wish you well sy 
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    • Posted

      I want to thankyou Sylvia for your input....it sounds very positive re the Hashimoto;  the internal temperature issue is certainly very different to all others' symptoms, and is certainly a good starting point.   There could also be other things going on as a result of the primary cause...it certainly is a worrying symptom re the "bad pain in base of skull", but surely, if read properly by the Radiologist (which I know is not always the case) and maybe wouldn't hurt to have either another MRI, or another radiologist read the scan...something should be found?  Why I say this, is because my Cervical Spine also has pinched the nerves coming out of that area, and Yes, I do get dizziness, but not such severe pain, as described by Angela....Bron
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      bronwyn the low basal temperature was first discovered in the 1920 s  Broda  Barnes lectured about it and wrote about it in his book . He discovered that it was a definite symptom for hypothyroidism.many many years later dr Wilson "discovered" if you took your temperature on waking Then every 3hours for a few days and it was a few degrees lower than normal ( 98.6. ) 37% and you had a few of the many symptoms he listed ( which are basically the same as hypothyroidism or CFS) you had wilsons syndrome! He said thyroid blood tests would most likely be normal and even if you are on thyroid hormone treatment it would not make you completely well. Personally I think dr Wilson came up with the same as dr broda Barnes did all those years before. I did this and sure enough my temperature was 96.6 to 98.3 over a two week period. Even so I was told to ignore this and there was nothing wrong with my thyroid and diagnosed with CFS . It took years of struggling with awful things going on in my body before I was diagnosed with hashimoto disease . I am not 100% well yet but certainly on my way . Sy
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    • Posted

      hi sylvia. the commonality of symptoms in cfs/me/hashi is interesting. have u had the actual tests for hashi. completed? did they indictae u had hashi as opposed to me/cfs?

      Caitlin

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    • Posted

      Thankyou Sylvia; I find all new learning very interesting; and have certainly learn't a lot from this forum.  Even after all my years of nursing, I still find there is still sooooo much more to learn, and it is people like you, and EileenH, who have taught me a lot, Thankyou:   and please can you forward on anything else that you know....it is the only thing that keeps me going some days (otherwise I become sooo bored, not being able to get out/work anymore), so it's the researching and learning from others that stimulates myself.....if it is not appropriate for this site, although as  you say, many of the symptoms are similar to the CFS,   I can forward on my email address via the private link....I shall also start reading re the men you have mentioned, and learn there too.  Again, much appreciated....Bron
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    • Posted

      Caitlin yes I eventually was referred to an endocrinologist and had specific blood tests and a thyroid ultrasound which confirmed hashimotos. This particular endo , who is ranked as one of the best by my GP , I saw a number of times way back in 1997. On these apps he was rude and disinterested in my sorry tale any info I had gleaned off the Internet or books written by specialists on thyroid illness I was told was rubbish and to put it in the bin! He said every test had been done and there was nothing connected to my thyroid , so I suffered on.these last meetings with him he was completely different very pleasant and interested in me?? He said he had looked through all my medical records and was shocked to find I had never been tested for autoimmune disease in particular hashi .  He was shocked? I was shocked as I had been told many times over the years every test had been done that had similar symptoms and definitely not connected to my thyroid and he was one of the doctors who had not tested for it so I am rather skeptical when GP s and doctors tell you every test has been done ! Hope this helps I know I grasped at any straw to find an answer to my illness   I would suggest you put this to your GP and check if you have been tested for antibodies what have you got to lose ? There are lots of sites for thyroid disease ( I am hashimoto disease , a letter for patients family and friends) is one I would recommend . Best wishes sy

       

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    • Posted

      Sorry that should read a few 10 ths of a degree lower than 98.6 /  .
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    • Posted

      thanks sylvia. sounds as though you've had a mis-diagnosis then i.e. had the ME/CFS label whilst your condition was hashi and treatable. i wonder how many others have had similar incomplete investigations & have been mis-diagnosed. the whole 'medicine' business of diagnosis/treatment etc. seems more a lottery than a responsible & reliable science.

      it's good to hear that you now have a proper diagnosis and in the throws of remedial treatment with hopefully a good outcome. btw what made u pursue the hashi investigations/diagnosis?

      unfortunately, any progress i've made so far with investigations/treatment has come from private consultations that i can ill afford. my GP is not open to questioning or patient suggestion.

      Caitlin

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    • Posted

      Back in the nineties there was no where near the info on the Internet but every thing I read with similar symptoms pointed to thyroid problem . At this time I knew nothing about hashi  like yourself my GP was not open to patient suggestions but he did some blood tests came back normal I persevered had more thyroid tests came back normal this is when he completely lost it with me!! He banged his fist on the desk stood up and said you stupid woman there is nothing wrong with your thyroid y its all in your head you're just depressed ! I walked out and changed GP s . My new GP made appt with an endo , the one I ha e mentioned, he did more tests when they came back normal he was rude and dismissed my feelings on the matter sent. Me off with a flea in my ear! Fast forward 1999 paid privately to see another doctor I gave him a book to read about a lady who had been diagnosed with five different illnesses suffered for 23 years ended up in a wheelchair and eventually given thyroid hormone ( armour NDT) Nd was back to full health in a matter of months and all she needed was a small white pill once a day!! This doctor started me on thyroxine 25 mg s upped it over months and I was 50/60% better within 3 months so I knew then my illness was thyroid related. As I was still not completely symptom free doctor sent me to tropical disease specialist all tests normal so CFS was the diagnosis given . Tho I was much better than before prescribed thyroxine I was still unwell and kept crashing and wiped out completely this went on until last year when I said 'I am not moving out of this surgery till I have tests for antibodies ( which I had researched ) peroxidase and thyroglobulin which she did there and then also made an appointment for a thyroid ultrasound results were confirmed  last November . A long road that many people have taken trying to regain. Their health   I am currently being treated the down side is there is no instant cure . A lot of trial and error with strength of doses but getting there . I hope you didn't get bored half way through I just wanted you and anyone else suffering to know that doctors can make mistakes as I know to my cost ! The book I mentioned is " tears behind closed doors" by Diane Holmes well worth looking up. Best wishes sy 

       

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    • Posted

      I want to thankyou Sylvia, as you have given all of us some hope....a direction in which we, ourselves, can start looking.  It doesn't ever sound  normal for us to just "have something wrong with us"....and if it took you sooooo much research and peserverance, then we too may need to do same?    Bron
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    • Posted

      hi sylvia. far from being bored by your uplifting report, i'm grateful that you have taken the time/energy/effort to inform me & others of your experience. this encourages ppl to question, persevere & stick with their instincts to get thoroughly investigated and properly diagnosed. apart from raising patient awareness, perserverence at GP/consultant level make the experts better listeners and more accurate diagnosticians. i certainly admire your courage & perseverance. i've had so many negative experiences with the Medics that i feel pretty defeated and diempowered presently. currently i'm in a 'crash' so juts enough energy to get by. think i've read that book by Diane Holmes some years ago when i was first diagnosed with ME/CFS. perhaps it's time for me to re visit it. my thyroid/thyroxine is rather unstable. not enough (T3) at 1 microgram but when raised by 25 micros T4 goes skywards. i haven't tried the 'armour' thyroxine. guess i need to read up on that one. out of a 0-10 score, how much would u say u have improved with the revised diagnosis & treatment.

      Caitlin

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      Caitlin for some reason doctors will not entertain prescribing T3 so I m surprised and pleased that you have been given it. It was after a lot of huffing and puffing that my endo agreed to it. he said he would work out a safe dose . I had said to him 15 years on thyroxine only is  long enough to know it is not working properly yes, I have improved but I am still not completely well. I had researched all I could find on T3 and there  were a lot of success stories either on Natural desiccated thyroid or T4 plus T3 or T3 only . I stuck to my guns to get it . It sounds to me you are having trouble tweaking the dosage every one is different so what works for someone doesn't work for another. I will mention now another book , ( recovering with T3) by Paul Robertson . He was ill for many years lost his job and his family on the way eventually took his health into his own hands and with help from an endo tried different theories and dosage and is now in full health. He is on face book and will answer any questions also lots of success stories that you can compare  yourself with . This is why I stuck out for the T3 . I have been on 20 mg s T3 but a lower dose of T4 100 mg s . I have definitely improved no crashes since January but early days may need tweaking again. I am no expert but all my studying points to many people having trouble converting T4 to the active hormone T3 . Paul robertsons site is worth a look at . Best wishes sy 
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      hi sylvia. delighted you're having such good results from the T3. it must feel like you've been given a new lease of life? have u plans for the well times???

      btw, i didn't get T3 from Doc. she just upped my the Levothyroxine & the T4 went skywards , so she reduced it to original dose which is below what i need. so are u on 20 micros. of T3 & 100 micros. of T4? do u know why Docs are reluctant to prescribe T3/4 in seperate doses?

      Caitlin.

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      Hi Caitlin , when I was prescribed thyroxine my tests were all normal new doctor went by symptoms not blood tests and over a couple of years dose was upped gradually to 250 mg s and although I was so much better initially the higher doses made no difference at all so dropped down to 150 mgs for a year or so. This is when i had appt with tropical disease specialist , I had been in Saudi Arabia during the gulf war and a lot of the troops had become ill when they returned home after the war ended so their was the possible chance it had some thing to do with that. It didn't !!!! And I knew in myself it was definitely thyroid related. This is when I was diagnosed with CFS  as all tests were normal told to read up on it and just live with it! I did and struggled on till last year when as I said earlier I was diagnosed with hashi . Endo let me try T3 in January and I certainly feel better for it my last reply should have said 20mgs tablet take half once a day plus 100mg s T4 . A very small dose as he wasn't happy about me takingT3 . So early days seeing him 1 st of May hoping he will tweak dosages and up it . Getting T 3 is difficult in this country . it is more expensive than T4 but docs say could damage heart. Which doing research is not the case are they frightened if something goes wrong they could be sued , this was suggested by one GP. In some countries it is banned I really don't know why. Some people have had their T3 stopped when they have been in good health and gone back to being very ill again on only T4 . It's all a bit complicated isn't it , but the thyroid working properly is a must for people to have good health . Best wishes sy
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    • Posted

      hi sylvia. thank u for that. as always informed & insightful info.. the approach your Doc took reminds me of a Doc Skinner's pioneering approach to thyroid problems. it's based on symptom/clinical picture presentaion rather than blood results. he incrementally increases the thyroxine dosage until an optimal dosage is arrived at. i'm not sure if he uses the T3/4 thyroxine or not. as the dosages you're on sound very low, i'm wondering if the favorable response is due to having both the T3 & T4? is low T3 a specific of hashi?.

      Caitlin.

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      It's a pity that more doctors don't take the same approach as dr skinner did , go by symptoms as they did for years before the synthetic T4 I am no expert but research proves some people have a missing gene that makes it impossible for the T4 to convert to the active T3 properly which is what is needed at cell level. Blood tests only show what is in the blood stream . a low T 3 isn't mentioned in hashi symptoms . Dr skinner was pilloried and taken in front of the medical board many times for prescribing thyroxine when bloods showed normal results even tho he had many many patients testify  they only became well after his treatment . Some people do well on armour ( NDT) which has all the hormones I have never been offered it and when I mentioned possibly trying it I was shot down in flames for even suggesting it , again!! All the best  sy 
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      interesting re Dr Skinner. i'm not surprised. it happens to most medics who attemp to think outside the narrow confines of the bio-medical model, the BNF and NICE guidelines. with Docs, its becoming a case of ''the BNF or NICE says No''. no individual discernment or symptom context considered. Davis Wallams (little britian) would have a field day. sadly those medics who dare to use their brain & not follow the one size fits all approach get the full weight of the GMC. i went to Doc Skin. when i first 'collapsed'. my then Doc wasn't doing anything to help sort me. however, she wasn't well pleased with me going outside the box and inferred she couldn't treat me, if i was getting treatement that she could not validate. that ended that line of inquiry. think i'll look into the 'Armour' thyroxine again when i come out of this present relpase. btw, is this the longest period , time wise, that you're health has maintained a sustained response?

      Caitlin

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