Tuesday, 14 March 2017

Chronic Pain Times Two

It's been a very long time since I posted anything. Everything has been very difficult and up in the air. In my previous post I mentioned that I have had lots of new symptoms. I thought I was getting a bad flu, but the dreaded flu never came, but the pains became more frequent, more widespread and a hell of a lot more painful! I went to my GP, and he thought I may have Fibromyalgia. It was a preliminary diagnosis, as I only had the pains and aches for a couple of weeks. I was advised to just carry on, and hopefully the pains would subside. Guess what, they didn't. 

Along with the joint pain, my skin is so sore. Clothes feel so heavy, and I am so weak ordinary everyday tasks seem like a huge burden. I am also constantly tired, whether I get some sleep or not. My GP says that it's fatigue, another damn symptom of Fibromyalgia. I have been to my doctors many times since Christmas, and both doctors in the practice agree that as well as Trigeminal Neuralgia, I do have Fibromyalgia. But, Fibro has to be properly diagnosed my a Rheumatologist, so I am hoping with every fiber of my being that it's not Fibro. I would prefer something else that can be cured with some magic pill. Having one incurable Chronic Illnesses is bad enough, but two?? 

My Trigeminal Neuralgia and Migraine pain has gotten worse than ever before. The intensity is severe, the constant burning on both sides is so difficult to handle. The shocks are quite frequent, there are days when the shocks are only a couple of seconds apart. Those are extremely dark days, and there is nothing I can do, and nowhere I can go for help. I have vowed never to go to hospital again. The more I think of it, the more I realise how badly I was treated while there. My new Consultant lied to me, straight to my face. After I was discharged, I was promised I would be seen as an outpatient within 4 weeks. That was in August 2016. It's now March 2017, and I am still waiting for my appointment. This Doctor has helped to completely destroy my faith in the health system here in Ireland. (Which is not hard.) She lied to me, patronised me and she was quite aggressive and really mean. I was at my most vulnerable while there. I reached out and asked for some help, but all I got was false hope and lies. I will never go back there for help. I have to go back for outpatient appointments, but I will never go to A&E and if I ever do get a letter from her, I will tell her what she can do with it. I am still angry about this, and I realise that it can't be just me. How many other people out there have been treated cruelly in our hospitals?

Living with constant excruciating pain is such a battle. Trying to stay as positive as possible, plaster the fakest smile on my face is intolerable, but necessary. Someone very wise said to me recently, "We are all fantastic liars," and she is so right! What do the majority of chronic pain patients say when someone asks how they are?

Do they say;
"I'm ok,"
"I'm fine,"
"I'm good thanks,"

or

Do they say;
"I feel like s**t"
"My pain is really bad today"
"It feels like Freddy Krueger is tearing open my skull, while battery acid is running down my face and some crazy person has attached jump leads to each nerve."



I bet most of us go for the 1st option, where we lie and pretend that everything is sunshine and daisies. This deception is necessary for most of us, but it is draining and exhausting. 

6 comments:

  1. Hi Sarah am so sorry to hear you have so many conditions going on, as if TN wasn't enough!! I am 8 weeks into a TN attack and am struggling to cope one with the pain and two with the side effects of medication. Until I got this I'd no idea. I get the feeling of being a burden but I wonder how much of our own guilt causes that. I'm dreading phoning work tomorrow to say I won't be back this week, again. I feel zombefied, shut in and am getting quite depressed. Anyway, hang in there and keep fighting. I've always been quite a strong person but this has rendered me as weak and vulnerable as a baby x

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  2. Sarah, Hi. I write you from Perú, South America. I was searching for information about Trigeminal Neuralgia, since my mom suffers it, and I stumbled on your blog. I just want you to know that I know what are you going trough. To see one´s loved one suffer, is also painful. I want to send you strength and patience, and wish you the best of the lucks, or destiny.

    And please, keeps us all informed if you, by a heaven send miracle, stumble upon some kind of relieve.

    Best of wishes, from Perú.

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  3. My name is Mark
    From New Hampshire
    I also have been dealing with TN for 17 years.Many trips to the doctors and 3 surgeries so far.
    Unfortunately the pain just keeps coming !
    Hurts real bad to shower,brush,and most of all smile and laugh.For me the wind has been the most painful thing to deal with,weird.
    From what I read,the coating around the nerve is damaged or gone .Sure would like some answers on how to rebuild the myelin coating !!
    Best of luck to you

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  4. My name is Debbie and My mother has TN, since ~December. She is 80. We've to several dr and tried meds and nothing has really helped. Now she has her medical marijuana, but I haven't seen that it alleviates her pain. Has anyone tried acupuncture or anything else that helped?!

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  5. I have TN for 19 years. It is terrible and no other words to describe it. Through the years I tried a lot of things. First tegretol. Did not help. Then tripilene, antidepressant also for pain. Also did not help. Then one doctor said combine the two. THAT worked. no pain. But I felt and looked like a zombie. Tegretol is a toxic med.
    Then I went to a neurosurgeon. He did a MRI scan on my brain. Saw that an artery compressed the nerve. I arranged for the operation. The janetta procedure. It took six months for good results. Totally painfree ONE YEAR. Fantastic. could eat and drink what I wanted, colds and runny nose did not affect me anymore.
    Then, I went to the dentist, six years ago, to have my amalgamates drilled out. Removed. Same day severe pains. Till now.
    So the last six years I tried a lot of things. From oral chelation to remove the heavy metals, the mercury, to vitamins, etc. I learned to be careful what I eat and drink. It is very important. tegretol, tripilene, etc did not help anymore at all. The mercury of the fillings that entered my brain as they were drilled out/ removed caused DNA damage.
    But, i use NO MEDICATION now. I avoid foods, drinks with preservatives. I avoid non nutritive sweeteners, very bad for the central nervous system. Avoid sulphites , lots of juices, sauces ,wine have that. Use organic stuff and cook your own food. Dont be so lazy.
    Dont use too high doses of fat soluble vitamins like vit A, D, E, K. they go to your brain, causes cranial pressure, and makes your neuralgia much worse. i use only a quarter strength. Like vit D take 200 i.u.
    1000 i.u. A day too much.
    Careful of metals. Copper only 1 mg per day. iron 5 mg and zink 3 mg per day. Please watch the labels. Especially the metals. Multi vitamins, etc.

    I use on a daily basis slow release magnesium, omega 3 ( the filtered mercury free type, again READ your labels) lecithin (good for myelin sheath) calcium, low levels copper, iron, zink . Like I described above.
    Stay away from antibiotics. It kills your gutflora. There is a organism called oxalic formigene that gets killed by antibiotics. That bacteria protects you from the oxalic acid because it changes the acid so that it is excreted and causes no damage If you eat food then with oxalic acids the acid binds with calcium etc and causes a lot of xtra pain. It can also cause kudney stones and in my case, Neuralgia pain. lots of nuts, chocolates, green veggies, soy, brown rice, have high levels of oxalic acid. On the internet you will get lists. An easy way to neutraluse the oxalic acid is to drink calcium CITRATE. So. Oxalic acids can also cause a lot of neuralgia pain if you have damaged gut flora. Always always use probiotics during a course of antibiotics. You can.even.use probiotics on a regular basis.
    And so I can go on and on. It is a lifestyle. You have to know what foods and drink to avoid. I am.on no medication and now have less pain because I follow the rules above. I am glad that prescription meds luke tegretol isnt working for me anymore, because the side effects cause more damage to the central nervous system.....

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