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Social Anxiety and M.E / CFIDS Has anyone had similar problems?

Discussion in 'Lifestyle Management' started by redrachel76, Jun 2, 2012.

  1. redrachel76

    redrachel76 Senior Member

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    I have been ill since age 15, with this only getting serious at age 19 due to worsening caused by doing Dr Myhill's treatment in 1995. I am now 35.

    During my 20's I was too busy getting used to the physical limitations of this illness to think about men. I also had old friends drift off and had to adjust to changing countries as I was/am living with my parents and needed them for physical help.
    Once I got used to being housebound frequently, severe pain, needing to watch what I eat, exhaustion blah bla etc.... you know it all. Once I got used to those limitations I realised I had social anxiety to top off the physical problems.
    I have self diagnosed myself with SA because I saw the official definition of "social anxiety" on the net and realised that it fits me exactly. In short, I am frightened of being friends with people face to face. I was surprised to discover that I am a bit nervous around female company as well as men because I was very outgoing as a child and pre M.E teenager.

    A lot of my fear stems from people asking me "What do you do?"
    Then when hearing about my illness.
    "What do you do all day?"
    I worry that they think I am mentally ill or being simply borring. I mean what is there for me to talk about when I am stuck at home and can't do much. I have an interest in politics and M.E research but it's not much.
    I also dread telling people about my illness. You know what some reactions are like.
    I also detest lying about it.
    I also have no idea of how to behave when going out with a man. This makes me sound like a freak. Perhaps I am.
    I also am scared of cancelling at the last moment and of the anxiety of it.

    I have been to a number of different psycologists over the years just for help with dealing with the physical limitations with this illness. I got no help.

    One psycologist even read Fred Freidburg's book and gave it to me then after a number of meetings made me a full head case.
    If you make the mistake of telling them you have SA on top of ME or CFS it makes them even more unsympathetic than they were before. Getting to a psycologist is physically hard in itself . They don't understand when I need to cancel in the last minute due to brain fog and exhaustion.

    Now at 35 I want very much to date, just at a very low level with the illness but I can't. I had an acquantance want to introduce me to a nice boy a few years ago and I couldn't do it. I should still phone and ask if he is still free but I'm scared. I also want to feel less nervous meeting and making female friends but I can't. I have managed to make one female friend who once suffered from depression and has severe ADHD. Therefore she sort of understands chronic illness a little - I think (?). I feel kind of dissatisfied with my friendship with her because her English isn't good so we can't have conversations at a deep level. I also feel that she does not fully understand this illness in the same way I don't understand what ADHD and primary depression is like. I feel nothing in common with people generally.


    Has anyone here had similar problems ?
    Even just the something small in what I said that they can relate to?
    Most important of all - How do you deal with social anxiety on top of physical symptoms of this?

    To be honest seeing some of the healthier PWC here who are able to date, get married does get me down. Maybe I should have sorted this out earlier than age 35.
    Beyond and silicon like this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Yes, I can relate to most you said. Got ill very young, have trouble talking to people, don't know how to explain my life or myself. I think the illness always creates social problems for us, sometimes worse than others. Yes it's very tiring because almost nobody can understand. IMO they can only understand if they have M.E. too or if someone very close to them (their spouse, parent, best friend) has it. Psychologists are sometimes worse than your average stranger, they are supposed to not judge us, but they do, looking for problems and wanting to blame our "attitude"! Definitely hard for us to schedule anything. And other things you said I can relate to also. Well said.

    I see some M.E. patients having good fortune to meet someone during a relapse, or finding friends at a local M.E. support group. Some have friends from before they got sick. Some make friends online or find relationships there. I have found relationships online, when I was feeling daring or so tired of loneliness that I would risk wasting energy, and put up with the anxious feelings, and just try meeting someone. I felt a little better when I met them, since I knew about them online. I haven't had luck with making friends. Most adults already have friends and don't have room for new ones IMO. I would like to have friends but find it hard with men, they are usually wanting more.

    Also see this thread. http://forums.phoenixrising.me/inde...ered-relationships-after-becomming-ill.13432/
    redrachel76 likes this.
  3. nanonug

    nanonug Senior Member

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    As a child I was socially awkward. I had absolutely no clue how to approach people. And when the time came to approach girls, I was an absolute disaster. Some 30 years later, I am convinced that had I been a child today, I would have been diagnosed with Asperger's Syndrome. Eventually, I decided to learn "social" the same way one learns "math" (yes, I was good at math.) It worked. I no longer feel socially awkward. In reality, and for the most part, I tend to be the "life of the party" or at least the loudest dude in the room. How did I do this? Both with a better understanding of human nature and proper dietary supplementation. Both took time to master.

    I personally deal with any kind of undesirable thing by trying to fix the root cause. ME/CFS is not a disease, it is a set of symptoms. As such, the first step is to identify the root cause. If you care to provide a list of your symptoms, I am sure many people here will be able to provide some pointers (things such as viral or bacterial infections, vitamin B12/folate deficiency, etc.) The second thing is, in my opinion, the initiation of a proper dietary supplementation regimen. In particular, to address your anxiety problems, I would suggest plenty of methylfolate. I personally take 5mg every morning. I also take a bunch of other stuff including a good multivitamin.

    Maybe you are seeing the glass half-empty. If you look at the glass half-full, you'll see that it is possible to obtain what you desire!
    oneone687 and meandthecat like this.
  4. redrachel76

    redrachel76 Senior Member

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    Nononug,
    I have tried the supplements route many times. It's never worked. At the moment my digestive system does not take folate or any b vitamins at all.
    Perhaps I unconciously feel I am not physically well enough for it..or perhaps not. The thing is it that it is is specifically meeting people that makes me nervous. ...and men about a million times more than women.
  5. redrachel76

    redrachel76 Senior Member

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    Thank you. Thank you ...it just feels so good to be validated. I see there is a special thread for relationships. I should have posted there. Ooops.

    What interests me is that you also got ill very young.
    Maybe that is partly the cause. Yes and Psycologists are definitely worse than your average stranger.

    That thread you posted is very interesting. It seems that a lot of people who succeeded in the relationshipts were with someone who already had someone ill in the family or had suffered ill health themselves.
    There was also that common thing about telling people they had M.E when they first met them and the person not understanding them.
    I went to a party a number of months ago. I chatted to man, mainly because I was lonely. I told him I had Fibromyalgia and severe pain walking (CFS is a name I avoid b/c they misunderstand that even more.). He said: "Well why can't you go and drive if you have pain walking."
    I didn't feel comfotable telling him that I had brain fog and explaining what it is so I can't even learn to drive. He now keeps sending me emails with pain relieving supplements and arnica because he says the internet can solve everything in health. I thought that going to a party and having a man like me that much would give me confidence but it's just put me right off.

    What age were you when you got ill sickofsickness?
  6. redrachel76

    redrachel76 Senior Member

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    Nononug,
    How did you learn "social" the way you learned Maths?
    I get the impression that you got physically better before you tried meeting people.
    Is that right?
  7. nanonug

    nanonug Senior Member

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    OK, there is actually some "interesting" info here.

    I have been afflicted with gastrointestinal symptoms all of my life. A few years back, in 2006, I discovered that I was infected with Helicobacter pylori. This is the bacteria responsible for ulcers in the stomach and duodenum. A doctor prescribed the standard treatment, which includes two antibiotics, and for the first time in my life, all gastrointestinal symptoms disappeared. Interestingly enough, my CFS symptoms also completely disappeared while I was taking the antibiotics. However, both my IBS-D and CFS returned just a couple of weeks after stopping the antibiotics. Looking a little deeper, the doctors suspected bacterial overgrowth in the small intestine. I was prescribed Xifaxan and just after a few days of treatment, both IBS-D and CFS disappeared. However, in this case, the effects lasted months. I was, and still am convinced that all of my problems originate in the gut.

    So, why I am telling you all this? Well, you need to fix the gut. And, once you fix the gut, I would say that there is a good probability that everything else will fall into place. The first step is appropriate testing.

    I can tell you that when I don't feel good about myself, I also don't feel good about meeting, or even be, with other people. My advice would be to not over-analyze things and just focus on finding and fixing whatever is wrong.
    oneone687 likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    IMO it's good you started your own thread :)

    I got ill when I was just 6 or 7. I knew I had changed, but I did not think of it as illness, and the first years were easier to push through. Still, by age 11-12 it had affected me very much and altered my life path. I wonder if I would have been an extroverted, social person if I had not gotten ill.

    Yes, hard to find someone with the experience and willingness. If I could choose, I would want a partner who had a sick ex-wife or an experience like that. So they learned how to deal with it, and if they were willing to do it again, that would mean something. Many who had the experience would stay away, not wanting to be a care provider in the future IMO.

    That's too bad. Yeah there are threads about how to explain the illness. I think even fibromyalgia is something people don't understand enough. They think they understand, when they don't. Some of the threads may give you ideas. I think it's better to say symptoms like you have dizziness, migraines. Pain when walking is good, I would say concentration problems and cognitive problems that come and go, flu like feeling, etc. I like them to get the idea that it's many different symptoms coming and going, with some being serious symptoms, serious enough to make it harder to live. I don't like to go on too long though, just around 5 symptoms or so.
    redrachel76 likes this.
  9. nanonug

    nanonug Senior Member

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    I bought, read and put in practice the teachings of Dale Carnegie ("How to Win Friends & Influence People"). Seriously! Initially, It was totally "fake" and "forced". Eventually, it became a part of me. I started practicing this stuff on chicks and, guess what, it worked!

    Nope! I only got better in 2006/2007. But I started living with my still current partner in 1996. And I was able to have several girlfriends/relationships before her. Do not ever underestimate the power of testosterone! :D
    Wayne likes this.
  10. nanonug

    nanonug Senior Member

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    When a woman tells a male she has a problem, one of two things might happens: 1) he doesn't give a hoot and quickly moves on or, 2) he cares and actually tries to help. This is how dudes are "wired". Given that the man you met is trying to help, regardless of the appropriateness of the solution he's proposing, it suggests to me he cares enough about you to try to fix whatever ails you. If you don't want dudes to try to help you, then don't tell them about your condition.
  11. Esther12

    Esther12 Senior Member

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    I got ill as an obnoxiously confident twenty year old, so don't seem to have much of a problem with social anxiety ("What do you do?" "Nothing!"), but I am starting to notice that I haven't really matured in the way that I deal with people. I'm now verging on middle-age, and beginning to feel like jokes/behaviour that was fine at twenty are starting to seem rather childish.

    If I'd fallen ill as an awkward teen, then I expect that things would have been much more difficult - it is hard to really develop in this strange situation, or even know how one wants to develop.

    The uncertainty and prejudices around CFS do make social interaction more hazardous, and more likely to go wrong. Personally, I think that this just needs to be accepted, and we should try to go on being as open and casual as normal. A lot of people are nice and want to be fair about these sorts of things, and I think that the general public are normally much more reasonable than most medical professionals.

    I really don't have the energy for social activities other than with my partner and families, so I'm only talking about bumping in to neighbours, and little things like that. Most relationships do require both sides to spend energy on maintaining them, and sadly that can be a luxury which is out of reach for many of us.
  12. Esther12

    Esther12 Senior Member

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    I've read some things like that, and try my best to be the complete opposite of what they recommend. If you do it with a sense of humour, I think that people often like it when one plays with social expectations, or does exactly the wrong thing.
  13. redrachel76

    redrachel76 Senior Member

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    I thought that book was for business, not good for social things. Having a quick look on Amazon, it seems very verbose longwinded old fashioned language. A bit hard for concentration. At least it is nice and cheap. I'll really think about getting this even if it looks like a hard slog to read. .. Thank you for telling me.:)

    I have done the test for Helicobactor Pylori twice and I don't have it.

    I have IBS-C not IBS-d and I am convinced that the the cause of IBS-C different to IBD-D.
    I could not get the tests for bacterial overgrowth in the small intestine done by my unsympathetic Gastro doctors. So I ordered the Xifaxan online and did it all on my own very carefully using Pimentals book and the protocol- exactly like it should be done. There was a slight improvement in bowel movement - a little less constipation and pain while I was taking it but not a lot. I took a small dose of antibiotic afterwards to keep the bowel moving like he describes in the book but the improvement was so pathetically small that it did not seem the hassle of taking the extra tablet and I left it.
    I felt no difference in CFS symptoms.

    I first got my bowel symptoms in 1995 age 19. I was on Dr Myhill's protocol of a super severe elimination diet (even worse than the Paleo diet) and EPD injections and supplements which were not good for me. I lost weight and my bowel problems started on then and never went away. Therefore I think I have something different to you.
    oneone687 likes this.
  14. nanonug

    nanonug Senior Member

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    Well, in my case, I did exactly what the book recommend. It worked! :)

    Yes, I agree. But I wouldn't be able to do the wrong thing if I didn't even know what the right thing was. And I didn't! This is where Dale Carnegie helped a lot. I still have a vivid image in my mind of a very attractive girl calling me "disgusting" because I couldn't even smile at her. That stupid crap hurt so much that I still remember, 30 years later!

    Nowadays, the only person that says that I am disgusting is my wife! :D
  15. redrachel76

    redrachel76 Senior Member

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    That's good advice. Thank You.
    But would saying Flu feeling put a man off ?...or maybe not, I dunno(??)

    Dizziness and concentration problems coming and going description I'll try to use next time along with the pain walking.

    The emphasising pain symptom was a tactic I used to use a lot with doctors and psycologists and lay people because it would shut them up a bit more than describing the other symptoms like exhaustion.
    I only have occasional painful glands on rare occasions now. I don't get flu symptoms anymore.

    One thing that I find hard is when doctors ask you which symptom is predominant and you have to chose. I would alwasy chose pain only because they seemed to understand it more. However that makes me more confused about how to talk to lay people about this.

    Thanks for your kind words and help though. How awful to get this at age 6.
  16. nanonug

    nanonug Senior Member

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    Did you also take neomycin together with Xifaxan? Constipation appears to be related to methane-producing archaea. Unlike neomycin, Xifaxan has no effect on archaea. Look at this:

    Methanobrevibacter smithii Is the Predominant Methanogen in Patients with Constipation-Predominant IBS and Methane on Breath

    Oh, absolutely! I recently bought and did the Metametrix GI Effects Complete Profile test and it found and overgrowth of an opportunist and histamine producing bacteria called Morganella morganii. This is one of the main bacteria responsible for scombroid food poisoning. So, besides SIBO, there's a bunch more stuff that might be happening.
    oneone687 likes this.
  17. Esther12

    Esther12 Senior Member

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    Oh yeah... I didn't mean to imply I thought others should take my approach (and on re-reading, my post kind-of does). Everyone should play about and find out what works best for them. Sorry to hear you had such troubles wehn you were younger, and pleased to hear you find things so much easier now.
  18. nanonug

    nanonug Senior Member

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    Well, as they say, what doesn't kill you make you stronger, right? So, don't worry, I developed a very thick Teflon skin. Besides, I consider banter to be a form of flirting so I am going to take your remarks as flirtation! :D
  19. Esther12

    Esther12 Senior Member

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    That's Dale Carnegie leading you astray again I'm afraid!
    merylg, taniaaust1 and Merry like this.
  20. nanonug

    nanonug Senior Member

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    You got me there! I was really just following Dale Carnegie's rule # 6969 that states: when interacting with rainbow colored mammals, led them to believe that teasing is a form of flirtation.

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