Discrimination on mental health. - Fibromyalgia Acti...

Fibromyalgia Action UK

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Discrimination on mental health.

lovelyredhead profile image
14 Replies

I tried to right a post to Ollie bailey ,and guess what ,this site would not allow it ,all be cause I put down a word that bedins with, BI. Polar. ..... you are not ALLOWED to right this word ,WHY ????????

I was trying to help this poor person ,with advice and this site would not allow it ,

DISGUSTING

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lovelyredhead profile image
lovelyredhead
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14 Replies
Regnofibro1 profile image
Regnofibro1

Not sure I understand.

Lou1064 profile image
Lou1064

I've never come across this before on any Health Unlocked forum, maybe try personal message facility xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Hi Lovelyredhead, Not sure what has happened here but we are not aware of any filters on language used on the site. Posts are moderated after they are posted. Perhaps it is the technical issues that HealthUnlocked have had recently.

Will try some test messages below to check:

Bi Polar

BiPolar

Bipolar

Did you receive any message at all to describe why it was not alloed to be posted?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

my posting with the words appears to have posted ok so perhaps it was just a local or tansient issue.

CarolineC57 profile image
CarolineC57

I think this must have been a technical issue on the site at the time you were trying to post, Lovelyredhead. There doesn't appear to be anything here which stops people posting about bipolar disorder. So I'm sure it isn't discrimination.

I drew Ollie's various posts to the attention of admin as it seemed he needed more help that we were able to provide on a fibro forum, and I know that some helpful information has been sent to him by Ken, The Author. :-)

Thanks for trying to help him, Lovelyredhead.

lovelyredhead profile image
lovelyredhead

Thank you to everyone that replied ,iv spoken to Ollie ,he was very up set ,I told him who to contact, as well .I was in the same place as he is now ,I didn't get any help for a year ,when you have Mental health problems ,everything in your brain is so muddled, and you have AWFUL feelings ,and you can't stop your self .I'm just pleased he left his number on his post.PLEASE can we all send healing to him ,and Love .

I hope he gets through this .

Thank you.

Kind Regards.

JACQUI

TheAuthor profile image
TheAuthor

Hi lovelyredhead

Please can I assure you that there are no 'word' filters on HU whatsoever, and this is why we have the forum Admin as from time to time we do have trolls leaving abusive and offensive messages.

I am delighted that you have managed to communicate with Oliie, and I sincerely hope that he is feeling a bit better now. I want to genuinely wish you both all the best.

All my hopes and dreams for you

Ken

stiltzski profile image
stiltzski

If that is so - which is great - why are we apparently not allowed to mention the possibility of an under-active thyroid being one of the causes of fibromyalgia? Blood tests will come back normal, but these tests should not be relied on (as the person who devised them in now testifies). I was 'diagnosed' with fibromyalgia in 2006 but eventually saw the famous Dr Skinner, who prescribed thyroid meds. I initially took levothroxine and now take Nature Throid, but these are not prescribed by my GP. I do still have some pain and tiredness, but I am now on no painkillers whatsoever (having taken Meloxicam and a PPI for years). I would not have surived even two days without a painkiller before. I also feel less depressed. I do hope this post will not be edited/scrubbed as surely our members deserve the chance at least to try and find a cure to their ailments.

maggi999 profile image
maggi999

Maybe I sleepwalk through my trawling of this site but.........why can you not say Hypo could be a cause of fibro?

Hashimoto's hypo causes mal-absorption of vitamins and minerals - as do other conditions caused by increased levels of antibodies.

Loads of fibromites are lactose or gluten intolerant and have to take supplements.

So many people with fibro also have autoimmune conditions, it seems logical to me that the connection should be examined.

I've spent the last 4/5 months reading up on autoimmune/allergies/fibro symptoms and I firmly believe that unresolved Hashimoto symptoms have led me to have fibro.

I'm seeing an Endo in October and I'm going to put it all to him to see if I can help to recover my own health with his support.

stiltzski profile image
stiltzski in reply tomaggi999

I was told this by a member of the Thyroid Forum but see also my reply below in this thread. Presumably you are you on the Thyroid Forum? Good luck with your visit to the endo in October. I have given up on them..

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Addressing a couple of points above. It is ok to discuss things but conclusions like this causes fibro or fibro can be cured by this are not appropriate without empirical evidence. Empirical evidence is not "this doctor says this or that" but clinical trials.

From the FMA UK medical professionals pack "For fibromyalgia, "red flags" indicating other potential pathology could include:

Involvement of the joints

Systemic malaise, especially with weight loss

Evidence of thyroid dysfunction"

Thyroid dysfunction is something doctors should be looking at as a differential diagnosis and not a cause of fibro. There are plenty of other forums where the thyroid / fibro discussion can be had. When there is peer reviewed evidence to be posted here then it will be welcomed.

But this all offttopic as the original posters issue was resolved and not a matter of moderation.

Also on the topic of moderation, the moderators give their time freely and have some policies from FMA UK to follow but also have to follow the guidelines of the health unlocked community and these are the ones that specifically refer to negative comments.

stiltzski profile image
stiltzski in reply todesquinn

We are all crying out for clinical trials, but, as you know, there is no money in it for the pharmaceutical companies and, in my experience, backed up my hundreds of members of Thyroid Forum, most GPs remain doggedly ignorant on the subject of the thyroid and continue to ignore symptoms and medicate on TSH alone. However, I would encourage anyone on this forum to join the Thyroid Forum on Healthunlocked too. It is amazingly suportive and could just provide some answers. I was not prepared to sit back and accept the 'diagnosis' of fibromyalgia and be in a wheelchair for the rest of my life. Is it a coincidence that the incidence of this illness escalated as the blood tests for hypothyroidism came in and doctors no longer treated the patient's symptoms? I was myself sceptical about whether I could be hypothyroid when I first visited Dr Skinner but I ticked over 90% of the symptoms on his patient form and he himself was in no doubt...it was an eye opener.

lovelyredhead profile image
lovelyredhead

I tried 12 times to right BIPOLAR.

At the time of that post ,that was not a NEGATIVE POST ,that was the FACTS.

I could not put BIPOLAR on my post.

I was trying to help Ollie ,it wasn't about Me ,it was a young man crying out for help,I understood him ,because I waited 2 years before I got to seen a psychologist. Also I suffer from server depression.

In the end I called him to see how he was ,Did anyone else call him ??????

Did you call him ??? I don't think so.

So get if my case ,you have not got a clue about me ,I got killed giving someone CPR ,I lost my 3 company's ,my home ,my husband.

My daughter and I was left with nothing ,after I'd worked all my life and had a 8 room bungalow in Upminster.

Worth £3,65000. I had a stroke lost my memory ,lost the court case.

Iv been left with 16 conditions ,all serious, iv had cancer 2 twice ,9 major operations, 6 car accidents ,all not my fault.I take 58 tablets aday.

Iv not been out side my home for 2 years cause I got RAPED by a person I'd known 19 years. Due to my injuries I can't stand for long or sit. THATS MY LIFE, IS THAT TO NEGATIVE FOR THIS SITE.You must live in a BUBBLE. Also my poor dad has Skin Cancer ,Pace maker ,Dibetic ,And his Kidneys have just stopped working. Now tell me is that all to NEGATIVE for this SITE,

That's my life ,

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

hi loivelyreadhead,

My comments about negative posts were not in any way aimed at you or your post. I was replying to the subsequent posts. I appreciated you reporting the issue and if anyone else has an issue like this then please highlight it and we can see what can be done.

FMA UK does not have any control over the healthunlocked platform. We can report things to the organisers of the site but that's the limit of our technical involvement. I also think the negative comments are when they are aimed at individuals and not when people are describing their own situations and the condition we all share. I realise that my previous comment about this was not as clear as it should have been.

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