Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Severe PMDD with M.E./CFS

Discussion in 'General Treatment' started by TheMoonIsBlue, Sep 21, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I've always had PMS. Always. I was on the pill for about 3 years, and my PMS was actually worse on the pill than off it (and it was the pill that is supposed to be good for PMDD).
    I've been off the pill for about 4 years now I think.

    Fast forward...here comes the PMDD from hell. I never knew what it was until I started experiencing it. The approx. 10 days before my period, I can get: 1.Emotionally unstable to a crazy degree 2. Experience exhaustion so bad I can only make it 10 feet to the bathroom 3. INSOMNIA 4. Crying jags for not reason 5. Feelings of hositility towards a person for no reason at all 6. All my CFS symtoms get way, way worse 7. Knowing that I'm acting or feeling crazy and not being able to do anything about it.

    Now from what I've been reading it is due to the drop in PROGESTERONE which is accounting for these symptoms, but then I read that they think progesterone could activate XMRV?

    I don't get why this is happening now, about 6 years into my illness. I am no where near menopause or perimenopause. I used to just get severe PMS and dread my period....now I look forward to getting my period!

    I also don't get the same degree of PMDD every month. Sometimes it is minor, sometimes severe.

    If hormones are indeed playing a part in this disease, I wish I knew what if anything I could do to feel better.

    I did have my hormones tested years back and the only things off was my testosterone was low due to my being on the pill.....I took topical testosterone (probably really dumb idea now) for a few months, after that everything was OK.

    If progesterone is involved in XMRV and then probably other viruses such as EBV,hhv-6, etc., wouldn't one feel BETTER when their progesterone is low?

    Ugh, so confused!:(
     
  2. urbantravels

    urbantravels disjecta membra

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    I really don't think we have enough information at this point to sort out the effect of hormones on CFS, certainly not any information we can usefully act upon. For all we know any one intervention could make us better or worse or have no effect, but we could make ourselves crazy trying to second-guess things.

    For me, being on the pill really does help a lot with PMS/PMDD, but I know very well that no two women react exactly the same way to the same pills. I've been on different formulations of the pill at various times in my life, and they do affect me very differently. I think this is one of those medications where you can't draw conclusions based on your experience with one formulation because they can have quite different effects, and it might be worthwhile hanging in there and trying more than one.
     
  3. Ocean

    Ocean Senior Member

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    I have similar symptoms. My doctor gave me some estrogen and it helped with the horrible mood issues. However it is giving me other side effects, so I haven't been able to take it steadily yet.
     
  4. taniaaust1

    taniaaust1

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    I have a severe PMDD diagnoses... and severe isnt exaggerating. Before ME/CFS I only had PMS.. but the ME/CFS changed the PMS into severe PMDD. I can get totally out of control with the PMDD (even hallunicinated with it a couple of times). In my case it happens 3 days before my period with it buidling up and the day before being the worst. If anything bad is going to happen with the PMDD it will be on that day before that I'll go so crazy (or suicidal) that I'll end up in hospital or in trouble with the law due to my severe reactions due to it. .. Ive hit strangers due to it.. eg sales person approaches me day before my period and I could just deck them. (I have to confine myself to my home when its bad as anything can then majorly trigger me emotionally off). Its shocking as its like im another person who is just watching myself out of control but can do nothing at all about it.

    L.ike you.. strangely I dont get it every month... each month varies.. so I never know when Im going to get very bad PMDD just before my period.

    I did try drugs (Loven an SSRI for this) and other drugs too but with no luck at all.. the PMDD still happened. I also tried natural progesterone but that didnt help my PMDD either. Anti-psychotic prescription drug didnt help it either.. neither did Lithium supplements. Doctors were suggesting to me that I have a hysterectomy due to having PMDD as severe as I do.

    One thing which did help thou is calicum.. but i find I have to take it daily and the effects of it on the PMDD may not be seen till Ive been taking it for 2-3 months.. 1000-1200mg per day needs to be taken if you want to try to treat the PMDD with it (there has been many studies done now on how it helps PMS).

    I have low testosterone too.. in my case its low due to the ME. Its not unusual for ME patients to have low testosterone. I had a testosterone implant put in but I was overly sensitive to the testosterone.. so got very bad side affects (aggression.. like steriod rage). So I now just leave my testosterone levels at basically nil.

    I did find out I had issues with hyperinsulinemia which also can have a major impact on my moods and I think since Ive been treating that (stricter diet then a diabetic diet).. I dont have so many incidences of the PMDD (so the two things happening together was adding to my issues. I wonder if coexisting MCS too may make me more sensitive to my own hormones).

    This is one condition which is very scary.. its like being completely taken over once a month and one fears what each month will be like and what one may do. I used to completely dread the days just before my period. (at one point I actually seriously asked a doctor if I could be locked away in a hospital the day before each period). I was actually in fear that I would kill myself or another. I ended up in jail over what I did the day before my period.

    Im so glad that my PMDD issue isnt "much" (still is some months) an issue for me any more (due to the low carb diet thing which helps my insulin issue). I think the monthly hormones may affect insulin in some way. I suggest a 2hr gluose tollerence test with the insulin levels included just in case you have something similiar going on as I did. I no longer dread my periods soon to come.
     
    concepcion likes this.
  5. Ocean

    Ocean Senior Member

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    Yes Tania I have it bad too. Like you it varies month to month but overall has worsened over time. I also noticed it got bad along with my other symptoms, before I had PMS too but nothing like this. Then again I'm older (although still on the younger side for getting perimenopause) too so maybe some of it is perimenopause? I will have to ask my doctor. I don't notice other signs of perimenopause though but I'm not sure. Diet does seem to affect it too and I'm going to try some supplements. Estrogen helped me but seemed to affect my sleep so I'm going to try a few other approaches, then maybe given estrogen one more try if those aren't good enough. I get in a terrible mood after ovulation and then again in the last week or so of my cycle.
     
  6. tandrsc

    tandrsc

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    This is a very trivial suggestion, but it helped some of my period problems.

    Try cutting out high fat dairy, so no butter, and stick to low fat cheese, low fat yoghurt and skimmed or semi-skimmed milk. It's just the dairy fat, so you can leave your veggie oils as they are.

    I know it sounds silly, but it's easy to do and I was amazed at the difference. I don't think my symptoms are anywhere as bad as yours, but you never know.
     
  7. Ocean

    Ocean Senior Member

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    Thanks. I do eat some non or low fat dairy most every day but I almost never have butter or other high fat dairy. Maybe high fat cheese once a month or two at most at that time of month when cravings hit. I do agree that diet changes help quite a bit, I've had the same experience as you that I'm much worse when I have too much high fat dairy. Other foods may be a factor too.
     
  8. Ocean

    Ocean Senior Member

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    I also get a feeling like I'm going to crawl or bust out of my skin with PMS, especially at night. It's sort of like a feeling of excitement or energy and feels both physical and mental, it's a bit hard to explain. Does anyone else get this? I wonder if there's a supplement or something to help with this. It does affect my sleep too, in that I will go to bed later when feeling like this. I do supplement with magnesium but have trouble getting as much of it as I'd like. Maybe seratonin is a factor? I also get worse restless leg during this time.
     
  9. L'engle

    L'engle moogle

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    I don't have severe problems of this kind but I do get worn out from the blood loss every month. One thing that has helped for me though, is that if I eat no wheat at all, my periods are much shorter. If I eat any wheat at all they are longer and troublesome. I don't know if this would have any effect for you since your problems are beforehand but I thought I'd mention it.

    I hope you can find some relief.
     
  10. Ocean

    Ocean Senior Member

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    Thank you. I was considering trying 5HTP to see if it helps with sleep and some of the other symptoms. I do avoid wheat almost always. Occasionally I may have a cookie or some pizza, but it's not often maybe once or twice a month.

    Update: I tried 5htp today and it is making me feel awful. So, not going to go that route again. In fact I think it's best I don't mess with my seratonin at all. I have bad reactions to SSRIs too, which made me hesitate in the past to try 5htp. Hopefully the effects will wear off soon.
     
  11. alice111

    alice111 Senior Member

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    I get this EXACT SAME THING! I also feel "icky".. and itchy...
    have you had any success with this??
     

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