Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Muscles and Ear Pain

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by wonderoushope, Nov 20, 2016.

  1. wonderoushope

    wonderoushope Senior Member

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    Hi at the moment I don't have full blown CFS, I have been diagnosed on the "spectrum". I have had bad bouts of it in the past. Lately, I've been getting lower back pain and my calf leg has been pulled and is taking a while to heal. The pull in the calf didn't seem to be caused by anything in particular. But it just keeps on flaring up. I just went to a physio because it was getting bad and pain was healing and the transferring to some other part of the body. I also get costochondritis and I have slight flares the moment, as well as sharp pains in my ears. Feels like what I imagine an ear infection would be but it doesn't last long. Might have the pain once or twice a week a few times a day and then it disappears for a few weeks and then comes back again.

    Do you think this is related to CFS? I have had joint pain in the past in my back and legs and just didn't put together that it could be related to CFS. I have had times when the pain completely isn't a there and I assuming that is when I am in remission. I can have months and months without pain and then all of my sudden lots of joints play up.

    I feel like I have this slight infection in my whole body at the moment and although my CFS symptoms at the moment are not full-blown, it sort of attacking body parts a little bit. Does that make sense? My fatigue symptoms are there, but I am not bed ridden too often. More just exhausted throughout the day and unmotivated.

    I haven't had a cold in years, but if feels like instead of my body detoxing through a cold, the infection just sits there and attacks my immune system in little bouts.
     
    Last edited: Nov 20, 2016
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  2. Valentijn

    Valentijn Senior Member

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    I'd be very wary of such a diagnosis. I've only seen the "spectrum" explanation used by quacks who think that ME/CFS is just a plain fatigue which is (perceived as being) more severe than normal fatigue.

    If you don't fit the appropriate diagnostic criteria, I'd strongly suggest insisting that your doctor do more investigating into your symptoms. The most useful diagnostic symptom of ME is a neurological/immunological/fully body pain/etc reaction to exertion starting about 24 hours afterward, and usually lasting 1 or more days.

    But in either event, new symptoms should be investigated by your doctor, even if you suspect they are an ME symptom. Sometimes they are the symptom of something else, which is often treatable, and occasionally dangerous if untreated.
     
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  3. wonderoushope

    wonderoushope Senior Member

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    Thanks, but this is from a CFS specialist at a major hospital in Australia and it's one of only a few clinics (fatigue clinic) in Melbourne, Australia specialising in CFS. I was on a 4 months waiting list. He went through my whole history and symtoms.

    That's the only way I seemed to be able to be diagnosed with something like CFS as GP's in Australia don't specialise in this area and so after all the tests and other specialists I went to, gastroenterologist (who thought I might have CFS) and endocrinologist with no luck so GP sent me off to this clinic. The specialist is getting me to do a MRI of the brain and neck as well. I guess to rule out something like MS.

    I've been to GP about these pains before and they have done tests like for rheumatoid arthritis and I can't remember what else. But it all came back clear. I've also been about the ears and they can't find anything.

    I have had bouts of clear PEM, mainly when I did personal training sessions. I crashed right after sessions and took about 3-4 days to recover each time.
     
    Last edited: Nov 21, 2016
  4. lansbergen

    lansbergen Senior Member

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    @wonderoushope Your discription makes sense to me. You could be a mild case and your immnunesystem is trying to control the infection

    It is important to stay within your limits. If you do not overdo you might have a chance to recover.
     
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  5. Hutan

    Hutan Senior Member

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    New Zealand
    Unfortunately this is no guarantee of a good investigation. If the clinic is at the Austin Hospital and the specialist Dr Oldmeadow, then I suggest you do some googling. Dr Oldmeadow is on record as saying some patronising things about the patients he sees. Some of his comments suggest he sees CFS as psychogenic e.g. the Royal Free Hospital outbreak was proven to be mass hysteria; CFS is caused by chronic stress.

    Hopefully your symptoms have been investigated well. The MRI is a good idea.
     
    Last edited: Nov 21, 2016
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  6. Hugo

    Hugo Senior Member

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    Its a sharp pain in the ears? Not like a pressure feeling?
     
  7. wonderoushope

    wonderoushope Senior Member

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    Yep, just a sharp pain, no real pressure.
     
  8. purrsian

    purrsian Senior Member

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    I agree with @Valentijn , this "spectrum" diagnosis seems odd. It sounds like a doctor who sees it as severe fatigue (thus you're on a "fatigue spectrum" up the high end) rather than the very physical, debilitating illness with many other symptoms that it actually is. Either that, or they see CFS as a "spectrum of many subtypes" (from the Vic Better Health website), which I think is an incorrect use of the term. "Spectrum" indicates it's on a range of lower to higher intensity. I don't think our many subtypes are on a spectrum - there aren't better subtypes and worse subtypes, they are just different with different types of symptoms.

    I agree that it's hard to get a diagnosis from anyone - I was diagnosed with post-viral fatigue syndrome and just had to assume that, since it lasted longer than 6 months, that I had CFS. No one ever told me yes, you have CFS. But I definitely do.

    I seem to have periods with lots of aches (generalised but especially in shoulders/back) and problems with my ears which are either full feeling, random popping or the occasional sharp pains you describe. No tests have shown anyway and I think I just have a long term mild infection which my weak immune system can't respond to correctly. I believe this is just a part of my CFS. About to try LDN, as it re-regulates the immune system. Like you, I also don't get colds/flus very often and it seems to be a relatively common CFS symptom. If you mention this to a doctor, you'll probably get a weird look, but plenty of us are "sick without getting sick".

    It sounds like you do have CFS, but you're just not in a crash. Plenty of people who have CFS aren't bedridden, but still meet all the diagnostic criteria. Think about someone with diabetes - whether their symptoms are managed with lifestyle changes or medication, or whether they are unmanaged with crazy symptoms - they still have diabetes. When you think about your better periods, are they better to the point of feeling like a healthy person again, or are the same symptoms there but with much less intensity than when in your worst periods? Have you ever rated yourself on a scale like this? http://www.cfidsselfhelp.org/files/rating_scale.pdf
    I have found over the years that it's a great tool to realistically reflect on how you're doing overall.
     
  9. wonderoushope

    wonderoushope Senior Member

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    Thanks @purrsian for your reply :) I really appreciate it.

    That's interesting you have had similar symptoms.

    I agree the "spectrum" diagnosis is a bit odd. But as you said "it's hard to get a diagnosis from anyone" and I have found it very hard to find any reputable specialist in Melbourne. I'm not saying this one was correct in his approach or his diagnosis, but I am yet to find anyone dealing with CFS or related issues who have really "got it". The other crowd that seems to be popular on here seem to be into alternative medicines and giving tests that are not really recognised by the medical board in Australia and charge a hefty fee upfront, so I don't know who to go to or trust? I go to who has been suggested to me, by both my GP and gastroenterologist. I am just doing the best I can with the knowledge and referrals that I have at this current point of time. (Sorry this paragraph is more of a reply to others about being sceptical of doctors diagnosis - trying to kill two birds with one stone. Don't worry I am sceptical myself).

    I'm lucky my GP is pretty good. She agrees that yes my body is kind of getting sick without being sick. She understands that my body shows mild infectious symptoms without it getting to a full blown thing, but CFS is not her area of expertise, so she does as many test as she can and sends me off to specialists. I have had glandular fever at some stage (but tests can't say when it was). I had my worst outburst of whatever I have about 3.5 years ago and because my immune system was so down I also got shingles at the time.

    I will say also, I do a lot of resting-up. I have my own business which is very flexible, so I am pretty sure I would be a lot worse off, if I wasn't able to PACE myself.

    To be honest I can't really remember if I haver felt completely better. I can't even really remember what that feels like or if I ever had that feeling my whole life. I have always had some sort of issue. I have constantly had gut related issues since a teenager and that has never really resolved itself. But since these CFS symptoms have come about I have more and more food sensitivities. I had one day last week for the first time in a long while where I felt great. Good energy, no stomach issues, no joint pain, no anxiety and I was like "Oh this is what it's like to feel good" and the next day, I went back to crappiness.

    Thanks for that link, that is very handy. I think when I have bouts of feeling better I am - 80 - near normal activity with some symptoms and at the moment I am at 40 - able to leave the house. Moderate symptoms on average. It's a tricky one, I would say a lot of the symptoms are still there when better, but just not so intense. But when I am better I don't have muscle issues.
     
    Last edited: Nov 21, 2016
  10. Hugo

    Hugo Senior Member

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    I had a sharp pain to early in my ME, I didnt think to much about since it vanished fast. You also mention that you had it in short interval, how short?

    Later I had a pressure in my ears and it was really tough since I got tired and emotional blank when I got that. It felt like I was under water. And it lasted for several hours even days when it came. A thing worth to check up when you have pain in the ears can be your teeths. I had a bad tooth and removed that and now the ear thing is much more rare for me.
     
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  11. Hugo

    Hugo Senior Member

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    Also something that can cause strange symtoms, and especially for us with ME I think.. is if you grind your teeths or pressure teeths.. generally when you are asleep.
     
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  12. wonderoushope

    wonderoushope Senior Member

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    Thanks @johmil I will go to dentist to see what they say.

    It's hard to say. I might have it twice a week for about 2-3 seconds a few times within a day and then it will disappear for a few weeks or a month or more. I probably first really noticed it happening about 5 months ago.

    I will say though I have always had issues with my ears. I get terrible pains in my ear from air pressure when flying in a plane. The pain is sort of similar. I also get a strange pain in my jaw and ear (sort of same pain) when I drink vodka of all things. It's like my ear and jaw cramp up and sometime I cannot move my jaw. I have had that for a long time and no one can explain what it is. I thought maybe at the time it was my wisdom teeth, but it still happened after wisdom teeth were removed.

    Dentist says I slightly grind my teeth
     
  13. wonderoushope

    wonderoushope Senior Member

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    Hmm having googled a bit more (especially ear and jaw pain from vodka)...it could be an issues with sulphates. Which kind of makes sense since I seem to react to a lot of the foods that are on the list of being high in sulphates.
     
  14. purrsian

    purrsian Senior Member

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    Yes sometimes, you just have to go with a doctor that's not perfect, because at least they have some idea rather than none lol It is best to listen to your GP and gastroenterologist if you trust their judgement. Also keep an eye out for other possibilities especially on here, where people can share experiences with doctors who know a bit about our various conditions. You never know when you'll stumble on to someone helpful.

    I tested positive for glandular fever too but also have no idea when it was! I did have a really bad strep throat that one doctor said might have actually been the glandular fever, apparently shows up differently sometimes.

    I also have always felt a little less than healthy, although it was never bad like this until I was about 18. But I spent a lot of time at the doctor as a child, thought that was normal but fiance tells me he basically never went. I've always felt that I had a weak constitution - that my body was just weaker than it should be. Perhaps that has contributed to why I was never the same after having glandular fever? It's funny, as the "type" that is thought to develop CFS is often thought to be the super active, busy types, but I've always been the opposite and it always annoyed me when articles used to talk about the type of person that gets CFS.

    That is good that you get up to an 80 at times! Have you identified anything that helped you get up to that level, or that dropped you down to 40?

    Overall, I've come to the conclusion that any symptoms I have are most likely going to be related to my CFS. Whenever you have a new symptom, check if it's appearance/intensity correlates with the rest of your symptoms. I've got an app on my phone called chronic illness assistant where I rate my main symptoms when I want - made me realise that everything is just tied together and when one is worse, all symptoms are worse. This probably will relate to your food sensitivities too, which is annoying cos when you feel bad, you don't want to deal as much with trying to stick to a specific diet quite as much! It's still good to talk to your doc about all symptoms and mention that you think it might relate to the CFS because although they might not be able to fix the cause, they can at least sometimes treat the symptom.
     
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  15. wonderoushope

    wonderoushope Senior Member

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    Oh yes, I am keeping a lookout, but to be honest it gets a bit overwhelming looking it at all the information and different protocols suggested in the forums. I had a brief look at the methylation, potato starch and vitamin threads and I got totally confused. But I understand what you are saying, keep a lookout for similarities in issues with other members.

    Me too! I always was getting tonsillitis as a kid and then around 17 I did get pneumonia and I feel like I never really recovered from then onwards. Of course my body wasn't as bad as it was now, but I started getting IBS issues then as well. My fatigue when it's at its worst feels like I felt when I had pneumonia (I was so, so tired when I had pneumonia). I'm the same I have never been an energetic person. I never got endorphins from exercise either, just sort of exhausted (but not to the extreme I get now). I do enjoy team sports though, but not because of endorphins I just like the atmosphere.

    Diet probably is the most noticeable and then rest and reduced stress. I am not exactly sure what gets me up to an 80! I probably wasn't as observant in the past. Because even though I have had this issue for over 3.5 years, I did have a kind of remission period (which I was in the 80's on that chart) for about 14 months and so I thought I was all better, but then I crashed again. And so now I have been having smaller crashes for the last 4-6 months. This time around I am really trying to observe a lot more and just not pushing myself. The only thing that is keeping me okayish at the moment, is a pretty strict diet, pacing myself throughout the day and getting rid of stressful people out of my life. To be honest I am not wanting to socialise at the moment, I feel like I am a bit depressed/and perhaps scared to socialise because it might overwhelm my body. I get over stimulated when interacting with people. I'm kind of a HSP as well. Although, sometimes I wonder if thes fatigue issues make me more alert and sensitive. But to be honest I have always been sensitive. If I am in a room with people and there is a lot of activity going on, I always get a tension headache. I feel buzzed and overstimulated.

    Thanks so much for the advice. I will look at that app and new symptoms and check if it correlates with CFS. This is the problem before I didn't correlate everything to one main illness. But now I am starting to see that they probably are all related. Thanks so much for your advice, I really appreciate it :)
     
    Last edited: Nov 22, 2016
  16. purrsian

    purrsian Senior Member

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    I've had the same problem, it's still overwhelming even though I have learned anatomy and physiology at college. So many factors, so little brain space!

    It's so hard learning to observe and interrelate it all and I wish I could go back to my first few years sick with my new knowledge on how it all connects and see if how things connected back then. It sounds like we have had very similar presentations of this illness! I do find that it makes me more sensitive, both physically and emotionally. Sensory overload is a pretty common experience for people with CFS, because clearly we don't already have enough to deal with :p Totally understand the lack of desire to socialise - it's hard to when you know how draining it is. I pretty much just have my family and my fiances family now, would rather have fewer high quality relationships than lots of lower quality relationships. Better quality relationships are easier to maintain anyway and less draining.

    I've had a pretty good experience using that app so far - it also lets you track medications/treatments so you can look at the graph of symptom intensity and see what's helping. About to start LDN, so hoping the app will help me connect whether it helps or not. It's got a food tracker too which might be useful for your food sensitivities. I don't use that yet, just the symptom, water and meds tracking.
     
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  17. Hugo

    Hugo Senior Member

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    Is it this app? https://www.chronic-illness.com It seems rather usefull, is it for free?
     
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  18. purrsian

    purrsian Senior Member

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    Yes that's it and yes it's free. I find it great as all the others I looked at only seemed to let you input your ratings once a day, whereas CFS is so up and down and I want to track my best/worst times of day over a long period of time. I go through times when mornings are worst, but then times when it's best.

    It has a lot of features, so I think it's best to try and stick to the parts that are most important to your needs rather than try and go all out and track everything. You add symptoms and medications via the website, not the app. And you can also use the website to look at graphs of all your data. Even without looking too much as the graphs yet, I already have a much better idea about my ups and downs, which is helpful to pace better.
     
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