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Could this be ME?

Posted , 3 users are following.

anna41347
anna41347

Hello everyone! I am really hoping someone kind out there could shed some light or even comfort me a bit here. I am feeling quite desperate now...

The story so far,and I'll try to keep it as short as poss:

I had a period of great stress in April, following a move into a new flat. within days my hands and ankles started to hurt to the point that I couldn't walk to the bathroom in the morning and hands felt like they'd been clenched all night (and still do). I had some severe cold sweats where my clothes would be soaked in minutes, severe sore throat and a thirst like i have never experienced in my life (I'm a 36 year old female from kent) and severe tiredness. I quit drinking alcohol and smoking and over about 2,5 months of rest the symptoms almost went away apart from the stiff hands and occasional fatigue and a shakey feeling where i need to lay down. 

Now 2 weeks ago a sore throat started after another period of stress and some alcohol and cigarettes (two nights out), the sore hands are worsening, my sore ankes are back, i have a severly sore throat with white spots on the back of my throat, severe fatigue and some thirst and itchyness around my eyes, but not as bad as before. 

My bloods have been taken over and over and I have had a CT scan and ultrasounds of my liver, pancreas, womb. It came back that I have some low level of inflamation in my bloods, elevated liver enzymes, high cholestrol and a small amount of fat on my liver and kidney stones.

I am a healthy weight, eat a very healthy diet and exercise moderately. I get sun and also take a vit d supplement along with folic acid (as i am trying to get pregnant for the first time), milk thistle, borage oil and a probiotic daily. I had glandular fever as a teenager, very badly and I also have a family history of auto-immune problems. Mum has mialitis of the spine, auntie (mums sister) fybromyalgia and nan has sjogrens syndrome and both nans have arthritis. 

If anyone can relate, shed some light or advise, I would be incredibly grateful. It's seriously getting me down.

Thank you!! 

0 likes, 15 replies

15 Replies

  • bronwyn97278
    bronwyn97278 anna41347

    Posted

    Morning Anna; firstly, let me tell you that from my research, there is a Big difference between CFS, ME and Fibro.........from your results, I would say, No to CFS, but a yes to Fibro and a Maybe to ME  (due to your liver and kidney results, and your Weakness); but if ME, you will need a Lot more of testing, and to find Someone who knows this/these disease/s....which I think you will find very hard to do, as many still put all three into the same catorgory.............if you can find someone to treat you for Fibro, then that will be a start, and see where/how you go from there?......do your Research (I found by going into the web and entering "what are the definitions for Fibro? then ME? and try CFS?), you may get More answers and what treatments that you feel are appropriate to you and your symptoms, and then take your answers to a Rheumatologist/Neurologist..(why I suggest Neurologist, is to Rule out anything more sinister, as when I first started having trouble, it was assumed that I had MS, as some symptoms of ME  are similar to MS, but need to be confirmed.....& for me there was no MS nodules on brain, but still get treated for Fibro, )....& and your symptoms. sound very similar to mine (the weakness and pain)....hoping that your GP is supportive, and will give you these referrals?....take good care of you and your emotions/stressors......should also add, that another supplement to add to your others could be Magnesium, as this does help with our Muscles and their workings of breaking down the "intake and outputs"......good luck,  Bron
    • anna41347
      anna41347 bronwyn97278

      Posted

      Thanks so much Bronwyn for taking the time to answer. I am living in Germany at the moment, so it's been a bit tricky finding the right doctors, but I have an appointment in October with a specialist in auto immune diseases at one of Berlins best hospitals. I will be going armed with all my research. I really appreciate your solid advice, thank you. My mum has to see a neurologist for her myelitis of the spine, so that makes a lot of sense for me to do the same. May i ask one last thing, do you suffer with brain foggyness and fogetfulness? lately it's been terrible and I feel like I can hardly hold a conversation sometimes. I forgot to add that to my original post.
    • bronwyn97278
      bronwyn97278 anna41347

      Posted

      Oh Yes, Anna;   everyone who has known me, notices this.....more Short-term than Long-term memory loss (sometimes I think I have Alzeimers).....as for conversations, I have made some Big boo-boos....some funny, some not so............My husband recently even said "to tell the specialists that my mind/brain is nothing like it used to be......".....and I get very frustrated, as although am 58, and would love to do what others say they Intend to do, and I have tried further study, but find that between the Lethargy and Forgetfullness, know it would be impossible to sit an exam......I can start to read something, and have to re-read it many times, before it sinks in..............as for the Forgetfullnes, many of us talk about "going into a room, but when getting there, forget why we went there in the first place"....................hence, Yes to both questions, too......................xxBron
    • jackie00198
      jackie00198 bronwyn97278

      Posted

      Bron and Anna: I have the same problem--short-term memory loss. I used to be a technical editor before my illness. I could never do that now. My brain is too compromised.
    • anna41347
      anna41347 jackie00198

      Posted

      Thanks ladies, I have been getting this more and more often. I keep putting things in the fridge that don't belong there - like keys. I have to think really hard to remember someones name who I have known a while and I am always walking into rooms and forgetting what I was doing, from what you've said, it sounds like a classic symptom. God knows how I'm going to cope starting a German language course full time on Monday. My strep throat hasn't even cleared up after a week of penicillin - seems to be getting worse even..
    • jackie00198
      jackie00198 anna41347

      Posted

      I assume your doctor took a culture and determined you have strep. I mention that because sore throat is a common symptom of ME/CFS. Not strep throat, just sore throat.
    • anna41347
      anna41347 jackie00198

      Posted

      He didn't take any culture. He just saw white spots on the throat and gave me a prescription. The spots are still there after a week and the symptoms are worsening. I think I will go back on Monday and get a culture taken if it doesn't improve over the weekend...  
    • jackie00198
      jackie00198 anna41347

      Posted

      Anna: Google "ME/CFS white spots on throat." I was curious to check this out. It seems that some people do get this with ME/CFS. Of course, other causes, like strep, have to be ruled out. Doctors are too quick to prescribe antibiotics, in my opinion. 

       

    • anna41347
      anna41347 jackie00198

      Posted

      I'll do that now.. thanks. yes, he was so hasty - didn't even check my my temperature!
  • jackie00198
    jackie00198 anna41347

    Posted

    Anna:

    So sorry you're dealing with this. You need a diagnosis. If you do suspect ME/CFS, you should see a specialist--preferably an infectious disease doctor with a knowledge of ME/CFS.  Other illnesses do need to be ruled out. The fact that you have a low level of inflammation in your blood makes me wonder if you have something else going on. A There are no markers for ME/CFS; therefore, nothing would show up in your bloodwork as confirmation of this illness. A good specialist will be able to look at all your lab results, ask you relevant questions, and reach a diagnosis. This was how I was diagnosed several years ago. The doctor took about 20 minutes to confirm that I had ME/CFS. Rest and pacing are crucial for this disease. Stress, as you've discovered, is a huge factor in exacerbating the situation. You need to find some way to de-stree, be it through meditation, listening to music, deep breathing, whatever it takes. This is a relapsing disease. If you overdo it in any way, be it physical or emotional, you greatly increase chances for a relapse. The good news is that since you're so recently ill, if you do have ME/CFS, now is the time when you have the best chance of recovering if you take care of yourself.

    • anna41347
      anna41347 jackie00198

      Posted

      Thanks for your kind words and advice Jackie. I really do need that diagnosis, not only for my physical health, but my mental health. I keep having silly fights with my partner, which isn't helping because he thinks that use tiredness etc as an excuse because I do not want to do things or go out and socialise etc, but socialising for me nowadays is so totally exhausting, even without alcohol or cigarettes I feel hungover afterwards. I actually started to get ill on my birthday lunch and I think it was the stress of organising it and having to talk to everyone - I felt obligated to do something for my birthday. I am just so glad I have found a group where people understand - what a great thing this is! many thanks smile
    • bronwyn97278
      bronwyn97278 anna41347

      Posted

      adding to the Raised Markers in bloods....if as the research says, these two different conditions (CFS and ME), can maybe, at this stage of research, be secondary to a Viral Infection, then Yes, you will have a raised ESR and WCC......in Fibro, the WCC is lowered (not sure why at this stage of research) ......................
    • anna41347
      anna41347 jackie00198

      Posted

      I will get MS looked into too as I also had a bad run of UTIs and kidney stones over the last couple of years that couldn't be explained and more recently a lot of dizzyness - again, which I forgot to mention in my post! there are so many things that are happening.  I have been feeling like I am on a boat sometimes when I sit down and very dizzy to the point of almost faiting - but mainly in the morning when my stomach is empty, so hopefully, it's just that. 
    • jackie00198
      jackie00198 anna41347

      Posted

      When I first got ME/CFS, I was diagnosed with interstitial cystitis, definitely related to the illness. A famous American author, Laura Hillenbrand, has ME/CFS and severe dizziness. 
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