Long Story Needing Help Please

Since about nine weeks ago I have had a very difficult time with Shingles. When the symptoms started it felt exactly like Coctchondritis which I have had many times before. On a Wednesday I reported to my Doctor pain on the bottom rib on the left hand side.

Costochondritis is inflammation of the cartilage around a rib and it can be extremely painful. Treatment is topical Anti Inflammatory cream and an increase in Prednisone up to 50 mg.

Over the following weekend a rash broke out from the middle of my back, around my left side to the middle of my stomach. I had never experienced pain like it and I have had serious pain. I passed out from the pain while trying to find a cool spot on my veranda because we are in Summer here.

Can you believe that? I have no idea how I came to get another disease let alone a rare one. Lol. And there's more!!! Since New Year Day I have been trying to fight off a Urinary Tract Infection which many know is very uncomfortable.

For the past four years I have had little or no support from my family. My father and two brothers live in another State and my mother and sister live within half an hour of me. My mother would call me occasionally but my sister made it clear a long time ago she didn't want to hear about my illness. My eldest daughter believes I created the illness by negative thoughts and does not speak to me.

Now this is my main question - Does anyone know someone who has been affected by their mother taking the Anti Nausea drug Thalidomide? On October the 23 rd last year my mother told me that when she was pregnant with me she was very sick with morning sickness. Her Doctor gave her an Anti Nausea drug, Distaval.

At the time (1960) my parents and older brother lived in a rural town in New South Wales, Australia. Thalidomide came under the Brand name Distaval. The FDA had approved Distaval and promoted it as a safe anti-nausea medication for morning sickness. The drug was extensively advertised with posters and printed flyers calling it a ‘Wonder Drug”. Doctors were given sample boxes to give their patients before it became available by prescription at the Pharmacy.

My mother told me she didn’t want to take any pills but she was dangerously dehydrated and she had been fainting. Mum’s Doctor gave her the Distaval and my father would give mum "a little white pill" and a glass of water every morning, before she got out of bed, from her 7/8 th week of pregnancy, for weeks.

The USA was very lucky because Thalidomide was not approved for use thanks to a savvy female Pharmacist Doctor Kelsey on the FDA advisory council. However there were still some sample boxes given out.

In Australia in 1962 it became Public that Thalidomide was causing serious birth defects across the world. There were no computers back then and communication was much slower than now. History tells us that over ten thousand babies were seriously traumatised and were born without arms or legs or both. Many thousands of babies miscarried or died soon after birth.

Over the past few weeks I have done as much research as energy would allow me. I have learnt that it depended what day the mother took the Thalidomide as to how much damage was done to the unborn baby. Some mothers only took one pill but because it was early in the pregnancy their baby was born without an arm or a leg.

I was very lucky because my mother did not take the pill until a little later and my arms and legs were not affected. The problem was because I looked normal when I was born it was assumed there was nothing wrong with me. At 8 weeks an unborn baby is developing the Thymus whic regulates the Immune System.

Ever since I was very young I have had health issues of some kind. Debilitating earaches, muscle pain, headaches, Depression. Then in 1990 I was diagnosed with Graves’ disease and from there my symptoms became more painful and frequent. Four years ago I could no longer work and was diagnosed with Fibromyalgia and Hashimoto’s.

I had medication resistant Depressive Illness for sixteen years until my Psychiatrist prescribed me a stimulant to increase my Dopamine level. That was on May 7th last year and the Depression lifted immediately with no side effects at all.

My issue now is last week I reached out to my family for some support because this has all been a bit overwhelming. Well that was the worst thing I could have done. My mother has basically turned against me. She has rang and told my father, two brothers and eldest daughter that I am not getting better because I want to be sick. Also she has told them I am taking dangerous drugs, I’m addicted and need to go to rehab.

This is really serious because my brother is a Psychologist in Melbourne and he works with street kids. He sees the drug addicts and what the drugs do to a person who abuses them. I am on opiate pain relief because I cannot take anti-inflammatory meds or anti-seizure meds. I have never injected my pain relief and take it orally for severe pain. It does not make me high at all. Last year someone stole some from my car.

They could cause a lot of trouble for me if they get it in their head that I need to be saved. My father yelled down the phone at me that I want to be sick. They haven’t supported me in the past because they didn’t even believe I was sick in the first place. They asked to see it in writing from a Doctor. Mum has been to the Doctor with me and he told her I have a dangerous illness. Until Saturday just gone I didn't realise they didn't believe me. My father said why haven't you gotten better from this apparent illness by now? Ha! They've had 24 yrs to find out about my A-Immune Disease & Fibro.

I am pretty devastated but also angry with myself for even thinking they would help me. How stupid am I? They weren’t before so why would they suddenly start doing the right thing now. It's not about compensation, I want to get help to get better.

My mother is refusing to put it in writing because she said she doesn’t want anyone to blame her for me being sick. My father claims he has no memory of giving mum the drug. The suspicious thing is that after it became known the drug was dangerous to unborn babies we moved in with my mother’s Doctor for nearly a year. My mother said my father arranged it, yet now he has memory loss apparently. My father is an intelligent active 75 year old who was known to have a photograph memory.

I didn’t blame mum because the Doctor and mum were told the drug was safe. However they could have told me a long time ago. Because I had arms and legs it was assumed the drug caused me no damage. It was noted when I was born I had bright red feet and all my life I have had Psoriasis on my feet. Mum told me it was Dermatitis but it’s actually an Auto Immune disease.

I’ve been accused of just wanting pity, playing the victim, being too self-focused and pathetic. Wow! Where did all that come from? I would like to meet someone whose mother took Thalidomide when she was pregnant with them. I would like to be checked out by a Neurologist because other Thalidomide babies report narrow ear canals, Thyroid Disease, nerve damage causing pain and now they are getting Cancer.(apparently)

I would be very grateful if anyone has any advice on what I should do or whether I should do nothing. This illness is hard enough to cope with without everyone in my family thinking I'm making the whole thing up. Has anyone else experienced that?

Thanks for reading this

Kittyhorse

Professional counseling could help you with coping with some of these feelings. There is a saying You can't control the cards you are dealt but you can control how you play them

I can relate to the lower rib pain and mine is on the left side also.......and I have had that rib soreness pain off and on ever since I had the shingles about 2 years ago around the left side ....... I remember how painful the shingles were and I had a kidney stone in the left kidney at the same time with the shingles ...

You will always find support and friendship on here ... we are all in this lupus family together and we can learn so very much from each other :)

BLESSINGS and PRAYERS

Shingles is (I'm told) an extremely painful condition. I hope it clears up with treatment & does not recur. I have read your entire post & feel you need some assistance in 'sorting' the myriad issues raised. Are you able to get in to see a psychologist who deals with Chronic Illness patients?

It will be an uphill battle in relation to Thalidomide as it will (perhaps) be assumed you are seeking compensation. Your treatment & actions now may be clearer if you shelve the (understandable) need to clarify 'why' for the time being at least. When you are in a better place physically with the min. of meds, you will be better placed to decide how & if to proceed with the 'why'.

Can you ask your G.P. to refer you to someone to do an big picture look at your situation & devise a fully informed plan of attack. (apologies for not knowing the name of this type of medical practitioner). I got on the right track when I saw Immunology specialists at P.A. Hospital Brisbane after a very difficult 12 months with others.

Best Wishes to you. Kaz xo

Hello, Thank you so much for the replies. My Vit D level is currently 20 mg/ml. Over the weekend I read some older discussions regarding Vit D. I appreciate the effort you went to informing people of the clinical findings of Vit D.

About three weeks ago I asked my Doctor for a referral to a Psychologist. My Doctor said "Well, see how you go", "It is what it is" "Talking about what happened in the past won't change anything" I'm aware it won't change anything, but I do think it will help me understand why my own mother won't help me. I'm really sad about that.

Not that I wish this illness or Shingles on anyone but after being accused of making mine up to get pity, getting validated from someone who has had it themselves is so reassuring that I'm not going crazy after all.. Lol

Kittyhorse

A Psychologist skilled with Chronic Illness will not concentrate on 'the past' rather on your coping strategies now & in the future. Good Luck. Kaz xo

Thalidomide, the hospital where you were born should have information about if or not your mother did take it. I did go to school whose mother had used( she looked like man in photo at bottom of wiki page on it). So if you are still concerned, contact the hospital plus your mother's doctor who was her OB doctor for you. You clearly have his name...either or both he and hospital should have your records. My mother was worried for years about me having it and hospital had a fire with my records ..so we could not get them. My sister went to work there and found out from employees and doctors that no doctors were using it. So i understand how it can cause worry ..did more for my mom than i. I am glad she could stop worrying and be nice for you as well.

Here is wiki link that has class action suit in Australia recently about it. http://en.wikipedia.org/wiki/Thalidomide

Some of us are not blessed with decent families, sadly. It sounds like you have yet to be able to let go of your family at least to where it is not interfering with your life and health. I have a strange family as well and finally found a decent therapist after trying about 5. So wait till you really connect, one who does not tell you what to do but helps you to discover things inside yourself...we all have the answers if we want to see them I truly do believe that and i also get how hard it is to see things when we are too close to them...or just see ourselves clearly. That is why i go to therapist because all the time i see people who cannot see bright as day why they have problem(s).

As to being sick all your life, the young woman I went to school whose mother had used it, was really healthy at least as much as rest of us through school Sure she had arms that did not look normal and i understand in her young adult or even older other things might show up but for her school years she was healthier than I.

I am very sorry you are having a difficult time and that your parents are not supportive. It is very possible that they might get shingles too as they age...they might learn how much it hurts and come around. But i hope you see someone who can help you see them for who they are and why they are this way. One technique i think helps if for children to write their parent's history or biography. It often helps to see logically what they are difficult due to their own problems and life's experiences.

As to shingles, there is prescription pain cream that really does help or did me with it and my mom who had it for about a year...seems older you are worse it is. Why maybe your parents will get it! I have had rib thing too and that same cream for shingles might help it but voltaren gel would too.

Just remember about pred pills can affect us emotionally especially at that high of dose. Hopefully it was for short time.

You might look into your drugs now if you are having hard emotional times as part of the problem, possibly. Try to be open and speak freely with your doctors....they need to know about emotional well being as well physical to do the complete treatment that is right for you.

I hope you have good friends who are supportive to you so you do get it from some source. Life really is much harder without it. I sincerely hope you feel better both emotionally as well as physically soon.

i would check vit d and possibly talk about LDN treatment as well...both can help us greatly.