Endometriosis and Me

Okay, Day Three on C0Q10 at 60mg a day. Yesterday my energy seemed to stretch out beyond the usual 4-6 hours, remaining until i fell into bed knackered at about 10pm. That makes a 12 hour stretch, but I do have the odd one of them.

Today I am struggling. I woke up with my fuzzy head and blurred eyesight and energy has been low all day. I feel like curling up and going to sleep. this may be because it is freaking cold again today. An electric fire has not been enough. I've had to put the frigging central heating on too because I couldn't stop shivering and my nose was icy cold!

I had a bad night's sleep. I was very tired, but was so restless. This in main was due to the fact that different parts of my body were too hot at the same time that different parts of my body were too cold. My shoulders were freezing, but my chest burning, my torso and legs cold, but my feet red hot! It took an unusual use of the duvet edge to keep the cold parts covered and the hot parts exposed!

I feel so tired I feel sick. I'm supposed to be going out tonight to meet friends and so I think i'm going to have to break my self-imposed rule and just have a little kip to see that I'm going to be alright. Coming on the computer sometimes takes my mind of things and gives me energy, but not at the moment.

As well as 100mg of 5HTP, as of yesterday I've also started on something called Co Enzyme Q10 (CoQ10). It's a substance (enzyme?)that is vital for coverting food into energy, esp heart and muscles. It's produced in every cell of the body, apparently, but if there is a decline in production "an important energy source is depleted and organs that require a lot of energy soon struggle".

This ties in with what I've been reading about that the cells of people with CFS can't make enough ATP, because the mitochondria is not working properly. CoQ10 is an essential componant of mitochondria "the body's spark plug" so it might help.

I'm taking 60mg a day and I get mine from here:

www.healthydirect.co,uk

More info on cells and CFS below:

http://www.positivehealth.com/Permit/Articles/CFS/but50.htm

Just to re-cap healthwise.

I started taking 5HTP at the beginning of April and nearly two months on I think I can say that it has made a huge and lasting difference.

The brain pain I used to get every three to four hours, which was eventually joined by blurred vision. Originally only felt when I was actually taking Prostap it had come back this year and had been getting worse and worse. The only way I can describe it is that it felt like all the blood was draining out of my brain. It was excrutiating and for a few weeks finally led to a life where every fourth hour I was simply having to stop everything and lie still in a darkened and quite room for an hour or so. I might not even be tired, but my brain demanded rest and so I had to give it.

This stopped within two days of taking 5HTP, and the blurred vision stopped for a week or so. Now I still get brain pain and I do have to rest because of it sometimes in the day, but it's an echo of the former pain. The blurred vision comes and goes, as does the ringing tinnitus. Sometimes this is accompanied by a very fuzzy head, and two or three days a week, I wake up feeling like that.

5HTP has also enabled me to sleep at night and through the night. This is like a miracle. For at least the past twelve months nights have been nothing short of torture. I would lie in bed completely exhausted, often in pain, and yet my racing mind would keep on and on and on until finally at some point around 4am it would finally switch off. If I ever did manage to get to sleep before midnight, I would wake up by 4am. In any case I could only ever generally string four hours sleep together in a row. This is turn would leave me even more exhausted and so along with the brain pain I'd crash out again four hours later. And so it continued, four hours on, four hours off, throughout the day.

You try getting your life together whilst that's happening to you.

Now when I go to bed at night I'm sleepy. SLEEPY. It's lovely. I go to bed tired at the end of the day and I just fall asleep. It's like the most luxuriant thing in the world. Sometimes I need a banana and milk to help me along. Very rarely I still wake up at 4am, but again a banana and milk smoothes things over. This has had the most incredible affect on my life, giving me plenty of ENERGY during the day, and has given me back my lust for life.

For a month the 5HTP gave me excruciating IBS (the endometriosis didn't help me there), and put me up a dress size. I went up to 200mg a day, but felt very sick and so I knocked it back down to 100mg. Since two weeks ago though when I had the Day I Over Did It, I've put it back up to 200mg with no adverse affects and it helps me get through the day. I'm back down a dress size too (almost, could do with losing more).

Since The Day I Over Did It, I've taken a bit of a knock back. I seem to get a limit of four hours again in any one day when I feel good, suffer little pain, and have energy. If I'm really sensible, keep away from the computer, stretch a little and rest a lot, I can spin it out to about six hours. But always, by late afternoon, something. Usually the nail-being-hammered-into-the-eyeball headache, sometimes brain pain, often excruciating neck pain, or just as today overwhelming sickness comes along and knocks me off my feet. And because I'm not tired, because I actually have energy and things I want to do, I find it so frustrating to just have to stop everything. The pain, whatever pain it is, and whereever it shows itself, just comes along and cuts me down. Most of my evening is then spent in quiet rest until i feel better round about now - weve been trying to get to the cinema for about two weks now and I'm just not well enough to go in the evening. The last two weekends have also been rubbish with us having to cancel things because I just don't feel safe to drive.

Because this is a knock back from overdoing it, I'm hoping it will pass, and also that the glasses, when I get them, will make a difference.

The only other thing is that my photophobia has changed into sensitive hearing (don't know the technical term for that symptom!). I can not bear noise, sometimes, like today, I cannot bear sound. Today this has meant no music, and no telly until 4.15pm to watch Deal or No deal. It hurt to hear anything and everything, but it has got better tonight. Add this to the fact though that I can't read much because of how it makes my eyes go funny and today has been pretty grim! I passed the time cooking and doing gentle housework, until after lunch when I thought I was going to puke and went and lay on the bed alternating hot and cold packs beneath my neck. I didn't sleep - I've promised myself not to, not matter how bad things are, I only "rest".

I thought the neck treatment had worked, but just having sat here writing this has made it go all tender again and I see I need to go and rest it yet again.

This post seems sort of negative, but in all honesty for those few hours in a day when I'm well, even if the fibro pain is there, I feel just like my old self. I acn't tell you what an absolute treat that is.

Without the 5HTP I have no doubt that I would long since have had to have gone back to my GP and begged for help.

So, as detailed somewhere below, my mother-in-law bought me a self-help book on Chronic Fatigue from her local library. She meant well, and I'm grateful she thought of me, but she was badly advised and obviously isn't anywhere near understanding what is wrong with me. I've not had a chance yet to clear things up.

The other week I met-up with one of my long-term friends. Actually she was one of the ones I posted about in "Death of a Friendship". After the e-mail debacle I reported in that post she did send me an e-mail to ask me out for lunch and not wanting to be churlish, I accepted, and was glad I did because how idiotic to lose a friendship because you are not happy about the way they replied/didn't reply to an e-mail. Yes, I know it was more than that, but when she made an effort with me it was all forgotten.

So we met up for lunch and we met up again last week.

Despite me never talking/e-mailing her very much about CFS I have never-the-less sent her one or two factual e-mails about my illness, and have told her that I was now sure the drug Prostap was behind my getting ill. I always thought she was pretty clued up about it. I thought she was clued up firstly because she declined my offer to explain more about CFS because she said she had another friend with CFS, secondly because she works for the NHS and is generally quite intelligent, and thirdly because she's a genuine certified hypochodriac and I reckoned she must have looked up just about every disease in the book thinking she had it at one time or another.

So when we were out last I asked about her other friend with CFS. She told me that her friend had gone through an emotional bad-patch after her mother had died and got into over-exercising and under-eating, and ended-up being "tired all the time". She then had to follow a regime set-up by her Dr to improve her diet and get her down to exercising only half-an-hour a day.

Erm.

And that has what exactly in common with my illness?

And that has what exactly in common with CFS?

I told her that sounded nothing like CFS, or ME as I have now started calling it, and that her friend was probably chronically fatigued which is not the same thing.

I mean, did she not wonder how the side-affects of a drug could cause the same illness as someone over-exercising?

Why don't people ask insead of pretending they know, or assuming they do?

Whilst out with other friends the other day I was spared the usual "you have to eat a good diet" type advice, but someone did say about CFS that "some doctors don't believe it exists" whilst slyly looking the other way. I mean, why did she feel the need to tell me that? Did she think she had some kind of insider knowledge that I wouldn't be aware of and that she thought I might find helpful? Or was she just being an arse?

What I should have told her was that, actually, some psychiatrists say ME doesn't exist and that CFS is a psychosomatic condition, but I didn't. I let it go. How long would it take me to explain?

Another friend keeps e-mailing and the first question is always "are you still tired?"

I'm feeling slightly haunted by all of this. This is on top of my brother cutting me off when I tried to talk to him about being ill, coming out with "if you didn't sleep during the day, you'd sleep at night" and "if you worked you wouldn't be able to sleep during the day". Then there's my mom, who if she phones when I'm not well, and I try to explain how I'm not well, actually laughs and takes the mickey.

It was ME Awareness last week and I wanted to send an e-mail to everyone I knew explaining the symtoms of ME (which are pretty much my symptoms, whether or not you can say I've got ME) just so I clarify the whole situation. Because no one asks and yet everyone thinks they know and they don't, and it's really pissing me off. I didn't send an e-mail in the end, only because I couldn't find one single article/document that summed things up well enough, and to write up something of my own seemed too demanding and too self-indulgent - a bit like EVERYONE PAY ATTENTION TO ME BECAUSE I'M ILL type thing.

But I'm feeling I should do something or there's going to be a whole lot of people on this planet who think that Pastabake took a year-and-a-half off work because she'd got stressed and was "tired all the time". And that, dear reader, would not be fair.

I printed the "What is CFS? What is ME?" document off and took it downstairs to read through it again at the dining room table.

I read through it and started on another document. I had been feeling weak, but before I got very far into the second document I started feeling sick with weakness. Eventually I gave up reading and rested my head on the table. Finally I felt so Ill I staggered up to bed feeling disoriantated and very woozy.

I had a couple of hours sleep and have just woken up and had something to eat. I still feel weak and my tinnitus is ringing off the hook. But I don't feel sick now.

I slept for about ten hours solid last night. It's a pain being so tired and ill only four hours into the day that you have to go back to bed.

Last night I went out for a meal with a friend and we chatted for about three hours. I went to bed exhausted, but it seems that a good night's sleep is not enough for my body to recover from such an "ordeal". My voice though, which by the end of last night had withered to nothing, has.

pituitary FAQ

http://www.pituitary.org/faq/

"Anyone suffering from a constellation of complaints/clinical findings suspicious for pituitary disease should get blood and urinary hormone levels checked and, if indicated, a brain MRI, keeping in mind that microadenomas may not show up on the x-rays. Combinations of three or more of the following may suggest the possibility of a pituitary tumor: sexual dysfunction, depression, galactorrhea, infertility, growth problems, osteoporosis, obesity (specifically central), severe vision problems, easy bruising, aching joints, carpel tunnel syndrome, disrupted menses, early menopause, muscle weakness, fatigue."

"It is important to go to a hospital with a Neuroendocrine Unit or Pituitary Testing Facility, preferably both. (This may necessitate plane travel, but it would be worth every penny.) Pituitary blood tests can be very complicated and must be performed by specially trained technicians who can conduct dynamic hormone testing and precisely-timed blood sampling, administer testing agents, and have special expertise in measuring pituitary hormones. Tests that require special attention include ACTH (Cortrosyn) stimulation, bilateral inferior petrosal sinus ACTH sampling, Insulin tolerance, growth hormone stimulation, TRH stimulation, GnRH stimulation, Oral glucose tolerance, and GHRH/arginine testing for growth hormone reserve."

What is ME? What is CFS. Information for clinicians and lawyers.

http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

The above document says everything. Reclassification of ME to "Neuro-Endocrine-Immune Dysfunction Syndrome" would mean that those of us affected by Prostap finally have a name for our illness.

By the time I got to the end of the above doccument my eyesight, which had been fine, had gone blurry.

Some useful things:

Lupron Petition
http://www.ipetitions.com/petition/Depot-Lupron/

Lupron Facts
http://www.geocities.com/lupronfacts/websites.html

Pituitary function and fertility
http://sciencedaily.healthology.com/focus_article.asp?b=sciencedaily&f=fertility&c=fert_drugs

Mitochondrial disease
http://www.clevelandclinic.org/health/health-info/docs/1600/1678.asp?index=6957

Lupron in IVF
http://popdev.hampshire.edu/projects/dt/dt33.php

About Leuprolide Acetate
http://www.healthdigest.org/drug-prescribing-database/leuprolide-acetate-1833.htm
(Opthalmic disorders listed. also note - "if further treatment is necessary, asses bone density prior to beginning treatment." Not done with me)

"Is this anyway to have a baby?" by Barbara Seaman
http://www.gilliansanson.com/articles/infertility.htm

Lynne Millican goes talks to the senate
http://www.redflagsweekly.com/features/millicanP.html

Medical literature reports that the use of GnRHa's in IVF has caused neurological symptoms - migraines, numbness and tingling, paresthesia and weaknesses and sensory ataxia - "Transient cerebral ischemia is one possibility that may explain the symptoms ... a direct effect of potent GnRHa on the central nervous system resulting in neurological effects independent of the hypothalamic-pituitary-gonadal axis is possible ... [and] it is quite possible that mild cases with minor symptoms have escaped notice; thus, the occurrence of this type of complication may be far more common that we realize." (Ashkenazi, et al, Fertility and Sterility, 53(4):738). To quote one investigator: "GnRH analogs are not like any other medication currently available for treatment of disease. As we continue to learn more about these analogs' mechanisms of action, it is increasingly apparent that they do not just affect the gonadal [sex] hormones, but are powerful modulators of autonomic neural function." (Mathias, 1995)

The interview with Colin went well. It is just something the government is initiating for all of those on IB to make sure that they are at least aware of the help there is available to get them back into work, if they wish. I do wish. Colin and I got on very well, and he seemed overwhelmed at my interest and at my illnesses, although I struggled to hear all what he said in the open plan office. I had visited this building before under the Tories when I signed-on after uni. Then it was a grey shabby space, with chairs bolted to the floor and staff kept behind barriers. Now it is full of bright soft furnishings with vending machines and desks spotted around like little islands.

The government outsource their recruitment help for the disabled. He told me about the several companies who have a government licence to help people get back into work. At first I found this confusing. I thought Colin would be the one who did that, but he seems to be just a facilitator, the one who points me in the direction of the right agency. Slightly dissapointing, but as X City Council is one of the recruitment agencies it's not so bad. I have this idea of working in a library or art gallery, or maybe, who knows, in local government. In any case XCC is a damn good employer (when they are not laying staff off because of government cuts) and so this has really piqued my interest.

I came out from the interview really enthused. In fact if it hadn't been for what had happened the night before, I'd have signed up there and then.

And what had happened the night before was a massive eye-blur attack. It was the most frighteneing one I have had to date, with everything becoming one big blur. The next morning I got up early and went straight away to book an appointment with the optician.

And I had that opticians appointment last Saturday. I explained about the ME (although not about the suspected cause) and told him that the eye-blur was sporadic and came on usually with tinnitus, but that I was also getting a lot of very bad headaches centering around my left eye. Then I told him about the detached retina in the left eye. The guy was great, so friendly and chatty, and such a good listener. He suggested I might be having ocular migraines - one of the nerves in my head was being irritated. Then he examined my eyes and said that the eye-sight in my left eye was so poor that this was probably causing an awful lot of strain. The sight in my right eye is not so great anymore either. After trying different strength lenses I could cleary see a huge difference between my normal eye-sight without lenses and an improved eye-sight with.

And so I'm getting glasses!

Supposedly just for reading, computer work, and driving, but walking around Asda yesterday I really noticed how I'm squinting at everything all the time. My eye-sight was never this bad before, and its deterioration has come on really quick. This morning on telly I just caught the end of an interview on This Morning with 2 girls who had ME. One was talking about going to her optician who tested her eyesight, then made her read for 20 mins, then tested them again. She couldn't believe the difference in the eyes - eye muscle weakness you see.

I have to also note here that I've noticed a lot of other muscle weakness as well as the weakness in my eyes. I've found my voice goes a bit wobbly if I'm feeling weak or just if I use my voice for too long - when I speak it sounds like I'm out of breath. My dad has this too, I've noticed. And the other day I was on the phone for about 15 mins when I came off and realised that my arm was useless, utterly useless. I couldn't lift it or use it or anything. That was, to be honest, scary. I've been feeling weak a lot lately and it can't be just lack of muscle conditioning because I've been consistently active for about a month now and it's getting worse. Anyway, lack of muscle tone would not explain the weakness in my eyes or throat.

As the girl on the telly said this morning after explaining about the noticable difference in her eyesight after reading - "That's not in my head, is it?"

And, no, it's not in mine either. I saw my counsellor for the first session on Monday (yesterday). Apparently a positive attitude and a general sense of optimism are not key factors in depression. I had nothing to talk about much other than good things like how I feel closer to getting back into work, and how I know more about my illness now, and what I'm going to do about it etc...

I did tell her that on Thursday I totally overdid it BIG TIME. And this has led to a little relapse. Friday I was out of it for most of the day, and had a really terrible, painful night, tossing and turning with little proper sleep.Coming back from the opticians Sat morn I went straight back to bed and couldn't get out of it all day. I dozed on and off (which was quite lovely actually) but no amount of sleep made me feel better. Over the weekend I was back to having to be helped to the loo and having things fetched and done for me again. I've slept for at least fourteen hours for five nights in a row, taken it easy all day, had afternoon naps, and yet I still feel completely and utterly exhausted. And in a lot of pain. Feel like I've been hit by a truck in fact.

My counsellor asked me how I felt about this. I said that it was a timely reminder that I still wasn't the full ticket and that I had to be careful.

No frustration, she asked? No anger? Or why me?

Nope, I replied. I don't feel like that NOW about things, although I did.

I told her the difference in how I felt last year - lost, frightened, hopeless, out-of-control, sad - and how I feel now - more in-control, a sense of direction, goals in life.

She told me well done. She told me I should be proud of how I've coped with all of this. I'm not depressed and there is very little she could do for me because I had accepted my illnesses and was finding a positive way forward, which is what she COULD have helped me do. Counselling would have helped me a little last year, I fear, but it can't help me at the moment.

We are meeting up in a couple of months just to make sure that that it still the case.

But, it would seem my GP is going to have to work a little harder now that my symptoms cannot be explained away in terms of depression. Poor GP. Only not poor GP, because by the time I go back to her I will have done all the leg-work on the connection between Prostap and my ME symptoms and she won't have to actgually do much thinking. Although SOME thinking would be good.

I am knackered still. I am worried about my eye-sight, but looking forward to getting glasses and the difference I hope they will make.

But mostly I am feeling positive, I am feeling optimistic about my future, because now I believe I have a future. I don't want to go back anymore. The past was not THAT great. The future looks better than my past did. I'm kind of over wanting to go back in time. I want to go forward.