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Please help :( scared

Posted , 11 users are following.

ellie77378
ellie77378

Hi everyone. Just a brief post because, well, I'm exhausted.

I've been suffering with crippling mental and physical fatigue for some time now, I've just been reading up on the symptoms of CFS/ME, I cried when I read it as I felt I finally had an answer for how I feel.

After suffering with depression and having previous blood tests back clear I just assumed it was this that is making me 'tired', though I never shook the feeling there was something more physical. It's so painful.

Basically I'm going to see my doctor tomorrow, I'm so afraid they won't take me seriously. If anybody has any tips on how I can handle my GP I would really appreciate it. I just want tp feel better.

0 likes, 47 replies

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  • bronwyn97278
    bronwyn97278 ellie77378

    Posted

    Hi Ellie;  we all know Exactly where you are coming from (we all feel that it is a never-ending rollercoaster).....can you print out all of the information that you have found..put a tick beside the symptoms that apply to you, and take it with you.....and when you go, insist that your doc does a Thyroid test, especially on your T3T4 Uptake, and have your hormone levels checked, too?  The results for thyroid may (probably) come back "within Normal Range"...but Beg for a script for a low-dose of Thyroxin (perhaps play upto your doc's ego)  "can I please just trial a low dose of Thyroxin?"....and if he/she suggests seeing a Psychologist for your emotions, go along with the doc....it won't hurt you, and I have/do the same when my Emotions get too much for me....I went onto the Internet, to find one who knows/understands ME, and just talk re your feelings, and they should give you some "coping mechanisms"....as this continual fatigue does need some help.....even to be able to explain to our family/friends, what is happening to us. I also think that you may get your "official diagnosis", sooner by being referred to a CFS Clinic/specialist/Rhuematologist (which ever is closer and affordable for you).  Another thing for you, if possible, is to take some "you" time...if you work, can you either cut back on your hours/take some sick leave?  This again could come from your doc; do you think it worth asking for a Medical Certificate, to give you that break....you need to be able to rest/sleep when your body tells you to do so....another thing that I find, is the vitamin supplements (the easiest for me is Berroca that I dissolve in a bottle of water, and sip away at all day.....For you to get the help that you need, you may find that persistence/perseverence is really needed...I hope that I've given you helpful advice, and wish you well tomorrow. Please let us know how you get on, and any further advice will always be here, on this forum, for you.     Giving you that hug that you are probably needing.....Bron
    • ellie77378
      ellie77378 bronwyn97278

      Posted

      Thank you so much for your kind words, I finally feel hopeful that I will get somewhere tomorrow. I just want to know what's wrong with me and feel normal again.

      I like your idea of printing off symptoms, I find it hard to talk as I have anxiety, and with my necessary caffeine intake at the minute I am struggling.

      I am hoping for a medical certificate so I can REST, I cry each day as I am too tired to breathe, I have no idea how I am managing to work.

      Hopefully this is the start of me feeling better, thanks for your kind words, I will let you know how I get on smile

    • bronwyn97278
      bronwyn97278 ellie77378

      Posted

      Oh Ellie...that smiley gives us hope after all....can I ask "are you on this side of the Atlantic", as the saying goes....in Australia, as your reply has come back, no sooner than I sent it off?  If so, it makes it sooo much easier to give you advice re the health system etc???  Bron
    • vsl77751
      vsl77751 ellie77378

      Posted

      Hi Ellie I myself have jyst been diagnosed with rhumatoid arthritis I like you had been having tests x rays ext and nothing but was transfer to a new hospital who fid tje correct blood texts needed. Still sore inpain tiered and weepy but on the up so there is light at the end of the tunnel
    • GeorgiaS
      GeorgiaS bronwyn97278

      Posted

      Interesting about Berroca Bronwyn. I take so many supplements in tablet form and I've never been able to swallow them easily. Once I was chocking to death on a rather large one an my friend punched me in the back twice and it shot out. He saved my life I'm sure! biggrin
    • GeorgiaS
      GeorgiaS ellie77378

      Posted

      We all know how you feel Ellie, it's frightening when something's so horribly wrong with us but a diagnosis definitely helps. If you get a referral for an ME/CFS specialist and you do have it there's help. I had some occupational therapists coming to my home to teach me what they knew about it. It really helped because they cared and I did learn from them though they didn't have all the answers.
  • GeorgiaS
    GeorgiaS ellie77378

    Posted

    At first when I had no idea what was wrong with me they kept telling me I was just depressed and I can't count the amount of times I told them I wasn't depressed but I was unsure of myself at the time.

    Now I'd have a list of symptoms as Bronwyn said, if the doctor suggested that it was down to depression I woud state clearly that it wasn't, and that if he/she won't send me to an ME consultant I'd tell them that I'd need to speak to the practice manager! cool

    Oh and if they mention previous blood test results being clear or suggest new ones say that ME/CFS cannot be diagnosed from blood tests.

    • Gizmo1963
      Gizmo1963 GeorgiaS

      Posted

      Hi Ellie, you could also ask to be referred to a rheumatologist as this is where I was diagnosed with both CFS and fibromyalgia together with osteoarthritis and degenerative disc disease. Good luck with your appointment :-)
    • GeorgiaS
      GeorgiaS Gizmo1963

      Posted

      That's a lot to deal with Gizmo! How do you manage it?
    • Gizmo1963
      Gizmo1963 GeorgiaS

      Posted

      Georgia, it's hard to deal with. I was still working up until March 2014 where my body and brain just gave up on me. I slept in the car going to and from work whilst my partner drove me there, slept all evenings and weekends but needed the money for my mortgage. I have been almost bedridden with pain and tiredness the past year. I have had many spinal, facet joint and trigger point injections, radiofrequency denervation (burning the nerves away), and ops. Now also found out I have the brca1 gene so had my ovaries and tubes out and I get checked all the time for breast cancer. I just been diagnosed with hyperthyroidism and I'm finding the thyroxine tablets are helping a bit. I would give anything to have my life back 
    • GeorgiaS
      GeorgiaS Gizmo1963

      Posted

      Perhaps stop letting them do things to you? Be gentle with yourself with good diet and herbs because your body needs to heal and invasive dangerous treatment might not do you any good?
  • dentalcfs
    dentalcfs ellie77378

    Posted

    Researchers are exploring exciting lines of evidence suggesting that depression is not simply an imbalance of neurochemicals in the brain but possibly fallout from an inflammatory response mounted by the body to deal with stress.

    Chronic low grade infection or allergy/hipersensitivity may cause that. It doesn't have to be perceivable as pain, either.

     

    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      They've done autopsies on ME patients and found that inflammation of the brain is always there. A Indian doctor put his hands on my head before I knew what was wrong with me told me I had it.

      Another doctor some time later told me that my white blood cell count is high. I have multiple chemical sensitivities, numerous food allergies and I've had to take antihiatmines for years due to skin itching.

      I get depressed sometimes because I'm sick of being ill but I have the ability to feel happy and hopeful a lot of the time. So why is that so changeabe?

    • ellie77378
      ellie77378 GeorgiaS

      Posted

      Thank you so much everyone, for your help.

      I'm just worried I wouldnt be taken seriously about it due to my history with depression. I KNOW it's more, and I just want it to stop.

      I will let you all know how it goes tomorrow. I'm going to write down all my symptoms etc before I go, I'm so nervous, my anxiety is spiking too lately due to the caffiene I'm taking to try to stay awake and alert!

      Thanks again smile

    • GeorgiaS
      GeorgiaS ellie77378

      Posted

      Remember what I said. If the doctor doesn't take you seriously tell him/her that you want to speak to the practice manager.

      Be brave, you can be! razz We're all with you.

    • ellie77378
      ellie77378 GeorgiaS

      Posted

      Thank you smile

      Of course I don't WANT it, just when you have felt so abnormal for so long I would be happy to have an answer and to not feel so alone.

      I've read through all of these posts and I feel for each and every one of you.

      I'm going to bed now anyway my arms and legs are killing me. I will let you know in the morning. Good night smile

    • bronwyn97278
      bronwyn97278 ellie77378

      Posted

      Hi Ellie; we all Understand how you "want an answer/diagnosis"...this in itself is why we do get Depressed.....I know that is why I became a different person for awhile....thinking things like "am I depressed?"   "what's wrong with me?"  all of the usual thoughts that keep bouncing around in our heads....and of course all of the different Testing, and nothing coming back....the Rollercoaster is a nightmare....and yes, the Frustration is enough to make us Cry....I know I've certainly been there, but it's not until you find a forum like this, that has Symptom Checkers, that you start to see "some light/answers" and get the Fight back to go and present yourself to an Intelligent Doctor (my Rhuematologist....who I had known/worked with and who knew the person I had been before)...that we get the recognition....and I know that you will too...talk when you get back from today's appointment......Bron
    • bronwyn97278
      bronwyn97278 GeorgiaS

      Posted

      Yes GeorgiaS; I have also read re the inflammation of the Myloencephalin sheath being inflammed...I remember ages ago where the early researchers thought that ME sufferers had been in contact with ?the herpes virus (chickenpox etc)...and the virus had affected the encephalus...which did ring true for me, as I had a Vey bad dose of the chickenpox in my teens, and come in contact many times after that....so there are still a lot of questions to be answered??? am trialing the Thyroxin though, as nothing else has really helped my ME....like others, will do anything to get some energy back......Bron
    • GeorgiaS
      GeorgiaS bronwyn97278

      Posted

      Rhodiola rosea helps the mitrochondria and studies are leading to that, every cell in the body can't get enough energy.
    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      Hi Georgia, I feel sorry to hear that.

      I strongly feel that the secondary symptoms of CFS are just so much, and it tends to get worse over time. I believe it's important to examine what was the initial symptoms years ago. I do not have much knowledge on the progression of it on later stage.

      The MCS could be hypersensitivity which is trigerred by neurological dysfunction, the food allergies could be later stage of digestion disturbances coming from the same neurological issue.

    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      That's a nice finding for sure.

      Also, for energy nothing beat (virgin) coconut oil. Seems that it contains nutrient that easily converted to energy. Lots of CFS patients swears by it!

    • GeorgiaS
      GeorgiaS ellie77378

      Posted

      I think more and more doctors are understanding and sympathetic about it these days Ellie. Just be strong and we'll be waiting to hear how it goes. razz Hugs
    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      Yes coconut oil is great stuff, I take it and even supermarkets are selling it these days. razz
    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      There are symptoms that I used to have that I hardly ever have now, such as headaches and diahorrhea and I can function a bit better than I used to so the herbs and diet must be doing me good. My advice to everyone is to keep at it. biggrin
    • dentalcfs
      dentalcfs beth79637

      Posted

      What? You haven't tried coconut oil? Where have you been cheesygrin

      I took a spoonful of it with water. Within 30 minutes I felt pretty ill, but within 1 hour my pain on my right elbow was gone.

      1000 causes, overlapping symptoms, yet the same nutrition for energy booster. Now is that a coincidence..

    • GeorgiaS
      GeorgiaS bronwyn97278

      Posted

      I've heard about the herpes virus being implicated too and a Kinesiologist said I had it, perhaps she's right.

      I think sick building syndrome was a factor for me because I lived in a Victorian building for years and the water pipes hadn't been changed for a long time so goodness knows how many little nasties got into my body! The landlord didn't maintain the house very well and I had a constant battle tackling mould. Goodness knows what else was wrong with the house. eek

      My son's ok though, but perhaps because of his youth his immune system was strong enough to cope.

    • beth79637
      beth79637 dentalcfs

      Posted

      It was actually a friend in South Africa that told me about it! Lol
    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      Wait, so you're able to pinpoint the initial issue for your CFS in which it was caused by mold exposure, mycotoxin inhalation?

      Are you now living in a mold-free environment? How long have you been free of it? And there is not much improvement afterwards?

      As for your son's immune, I would say otherwise. Your immune were overreacting to it, while his wasn't. But otherwise, mold toxins are indeed dangerous stuff, so its bad for all of you.

    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      Ah sorry, I missed this post. So after free of the mold exposure, the headaches and diarrhea are now gone. That's great improvement.

      Have you tried B6 and B12 vitamins to help recovery? Have any doctor prescribed you so?

    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      I just thought the mould was a pain in the rainbow, I got sick in that house.
    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      Yes I take B vits from the doc and thiamine. They help but something that really helps if 5-HTP, which I have to buy but it's so worth it!

      If I don't take it every time I wake up I'm in a state of fear and panic. When I take it I wake up feeling more relaxed.

    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      5-HTP, that's very interesting choice. Was it prescribed as antidepressant? As other first-line antidepressants did not worked?

      Also you haven't told me how long you've been mold-free. You're already mold-free now, right?

    • GeorgiaS
      GeorgiaS dentalcfs

      Posted

      Hehehe I seem to be quite mould free now. 8 years mould free. And 5-HTP isn't prescribed, my friend came to visit and left some behind so i took them and was amazed by how it made me feel so much better, human and less afraid. So for me it's worth shelling out for.
    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      Serotonin deficiency due to digestion disorder seems a strong link. In which the 5-HTP would perfectly fit in. That sick gut feeling, yeah I knew that well. It suck, even when I'm on MAOI inhibitor (natural ones). Healthy gut does equals to feeling good.

      I assume that your digestion issue came later during the CFS, is that true?

       

    • dentalcfs
      dentalcfs GeorgiaS

      Posted

      An interesting research on mycotoxins exposure to CFS patients in 2013, "Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome". As all CFS research, of course the pathogenesis is inconclusive. I believe yours were mold-induced CFS, as with travis13. It is interesting that travis13 does not have digestion issue though, I'm hypothesising that your immune was much more overreacting to the mycotoxins, compared to his.

      And why did my upper wisdom tooth infection without abscess was resulting on all the CFS symptoms, except headache and swollen glands? And that includes hallmark fatigue and post-exertional malaise symptoms. I tried stupid 30 minutes light exercise 3 times, and I was sick with low grade fever the day afterwards. I thought I was incidentally caught a cold after the exercise, but the symptom was repeatedly consistent. The third was terrible, I had to stop halfway during my exercise as I don't have the energy to continue. Then I got fever and very ill for the next 4 days. AFAIK there are no other illness with such symptoms, other than CFS.

      Now 2 months after extraction, the post-exertional malaise along with other symptoms are 100% gone. Just ups and downs of digestion issue. Probably I should recheck for fungal spore, but as my NK cells recovered, I believe they will handle it.

      I found someone that might have the exact illness as mine, jill21196, unfortunately I haven't seen her posting back in the forums, I am just hoping the extraction would completely cure hers, as well.

      I'm just feeling that if I recovered without even knowing what the prognosis is, then I'm an idiot. I've come up with another hypothesis, and suggests that neuroregeneration will be an important key for your recovery. I've found two stuff that may help; NADH supplementation and Lions Mane mushroom. See if your doctor agreed with it and come up with some dose.

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