Famous people

[pinot]

Hi friends I came across an article and it was naming a good few famous people who suffer with this condition and also Florence nightingale actually had this all those years ago so it's not a new illness it's actually goes back quiet sometime. I think it used to be said it was rheumatic and fibrositis. Google famous people who are suffers it would be interesting to know if they would highlight our cause. Just a thought. Xx

[Em08]

Hiya. Who are the famous people please? Be interesting. Thanks xx

[cespinosa]

Hi, I know the actor Morgan Freeman has it and spoke about it. Then there's Sinéad O'Connor, and Jo Guest. There's more but can't remember.😕

[Mdaisy in reply to cespinosa]

Jo Guest has ME

[Mary-intussuception]

Hi Pinot.

I was told I had Fibrositis decades ago. That was it. No more said. I thought it was a short term thing as suggested by the name? Inflammation?

Actually I have Hashimoto's Autoimmune Thyroiditis and Hypothyroidism. Was left undiagnosed and untreated for many years. A Rheumatologist said I had Fibromyalgia in 2010. It was only when I looked it up I discovered it was the 'new' name for Fibrositis.

X🐥

[Mdaisy in reply to Mary-intussuception]

Out of interest were you misdiagnosed with Fibro or do you have it secondary to Hashimotos?

[Mary-intussuception in reply to Mdaisy]

Good question? Not sure how to answer.

I was told I have Fibrositis by a Consultant (or his Registrar) a long time ago. He was very gentle and serious looking. However I don't remember much else from that occassion or what else, if anything, he said. I didn't ask anything that I recall either. Wish I'd said something like 'What does that mean?'

In 2008 after lots of stress and illhealth, I finally was seen by a Colorectal Consultant. Following an incident of significant chest pain I eventually got around to seeing a GP day before my hospital appointment. I had long lists of blood tests for each done at same time. Neither told me the results. Amongst other findings (including raised Liver Function results and evidence of a recent M I) I had Hypothyroid Blood results. It was in 2010, on a follow - up Appointment with the Rheumatologist that he noticed the Hypothyroid results on the computer and retested. I was feeling better by then. They were Euthyroid so he ruled out Hypothyroidism !! I recall when he was examining me on the first appointment that he stopped because it was so painful. It was on the last visit, when he discharged me that he said I have Fibromyalgia.

I applied for copies of my hospital records and saw that my Euthyroid ie 'normal' results were in fact at low end of T4 and high end TSH.

A lovely woman on a Thyroid helpline listened to me tell of all my symptoms and diagnosed me over the phone! You have Hashimoto's, she said and told me to ask my GP for an Ultrasound scan of my Thyroid. The morning after the scan he made an urgent referal to an Endocrinologist who tested Antibodies and arranged urgent Short Synacthen Test to check my adrenals first before starting me on my Levothyroxine. So at last I was formally diagnosed late 2011. As it happens a Gastroenterologist had tested Antibodies and had written to the other Endocrinologist.

So what comes first? I believe my Mum had Hashimoto's but was never diagnosed. Her Hypothyroidism was diagnosed very late - in her 70's. I was told once that her thyroid wasn't UNDERACTIVE but it was INACTIVE. So I believe mine is inherited. I couldn't understand why I could be so well and then so ill after a cold or respiratory tract infection. It would take me a long time to recover and the weight would just pile on from nowhere. I would build up to feeling more fit again then wham. I was going around in circles. I tried to say to doctors that I thought all my various symptoms and illnesses might be connected. I'd go to GP with a list. They'd pick one or two to deal with.

I've had problems with my legs and feet for as long as I can remember, all my adult life. Poor circulation, phlebitis etc. I'm now being seen at the Lympthoedema Clinic. Will shortly have my made-to-measure stockings fitted.

I have wondered if everyone who has Fibromyalgia has had blood tests to check for Thyroid Antibodies, TPO & Tg. As it seems that in my area these are only done by Consultants - yet not all. In my case the Rheumatologist didn't, just did TSH and T4. As with Hashimoto's bloods can fluctuate testing these 2 alone isn't reliable.

X🐥

[Mdaisy in reply to Mary-intussuception]

Thank You for your reply Sounds like you have had a long journey to get the answers you needed.

I do agree that some misdiagnosis can occur on occasion especially due to inadequate testing of Thyroid profiles and also Lyme disease too. I do wonder about the connection between Fibro & Thyroid but feel they are two separate conditions in my opinion.

It could be you do have Fibromyalgia as a secondary condition but as the symptoms are so similar I feel with the poor testing they can be confused so easily but medics unfortunately.

Have your symptoms improved now you are being treated for Hashimotos? I do hope so...after such an exhausting journey .....

Emma

[Mary-intussuception in reply to Mdaisy]

Do you know Emma I wasn't sure if I should have clicked 'submit' on that. Don't suppose you were expecting anything so long! Should have given a simple answer! Sorry. I still suffer but just get on with things when I can. Not long home from a Barium Swallow - could write a small book about findings. Nothing nasty though.

As I was diagnosed with old fashioned 'Fibrositis ' in the early 80's (or was it late 70's ) I suppose I do have Fibromyalgia. I have wondered in the past if it is sometimes given as a diagnosis rather than keeping up with investigations for other conditions also. Like being told it's IBS when actually you have long term Diverticular and Intussuception (and more!!) How is Fibromyalgia proven /disproven? I don't know. I have so many conditions ( now a few more to add to my list). Being left for so many years undiagnosed and untreated Hypothyroid did it's damage and I have lots of conditions now I believe are down to that. I get lots of problems with my feet and legs. Then other days they are ok! Real extremes in severity of pain. Some things have improved since being on Levothyroxine but I'm left with permanent conditions I'd rather not have but keep on top of as best I can. I lost a stone ( 1 of my 5 put on over the years of ill-health pre - diagnosis) in a few days when I caught a nasty gastro bug. Although that took a long time to recover from I am coping better with one stone less excess weight.

X🐥

[Mary-intussuception in reply to Mary-intussuception]

Forgot to mention, Emma, I found out in April that I have Vitamin D insufficiency and Folate deficiency -thanks to Thyroid forum. I asked GP to test.

Sadly, no doctor ever told me that I could have absorption issues due to having Diverticular (revealed in Barium Enema xray in 80's and again 2008). No one told me people with Hypothyroidism can have absorption issues either!

I had mentioned in the past that I eat well and don't seem to be getting the nourishment from my food! Not bad for a lay person!

I was so angry when I looked up Vitamin D deficiency symptoms and Folate that I wouldn't see the doctor straight away.

Mary 🐥

[pinot in reply to Mary-intussuception]

Omg that's worrying, I have diverticulitis to as well as fibro and wonder if I should have my vitamin levels checked. Ty for posting this.

[Mary-intussuception in reply to pinot]

Ask your GP for blood tests to check nutrients levels in particular

Vitamin D

B12

Folate and

Ferritin.

Have you ever had Thyroid Function blood tests? Thyroid Antibodies - TPO and Tg?

Look up the symptoms of deficiencies of each nutrient on NHS choices.

Xxx🐥

[Mary-intussuception in reply to Mary-intussuception]

ps

I found out yesterday that I have Diverticular on Duodenum also !! Showed up on my Barium Swallow (amongst other things). I told the doctor 'well I have Diverticular in all three sections of the large colon' He replied 'you can have them in the small intestine also'.

Isn't that where absorption of nutrients from food takes place name? !!

Xxx

[Mary-intussuception in reply to Mary-intussuception]

I typed takes place!!!

Do wish this phone wouldn't write what I don't!

[Hidden]

I was on y/day we were talking about lady ga ga and I was saying I don't know anyone famous with fibro.: 0)

[Mdaisy in reply to Hidden]

Darwin may have had it apparently and possibly Paula Abdul but never confirmed

[phlebo123]

I have also read that Cleopatra had the symptoms of fibromyalgia, so it has been around for thousands of years!

[Hidden in reply to phlebo123]

So all that asses milk didn't help Cleo ;0)

[Hazel_Angelstar Administrator FMA UK Staff]

Yes Florence nightingale was believed to have had fibromyalgia . Her birthday was 12th may and that is why this date was chosen for international FM awareness day

You may have seen in the last few days that lady gaga has said that she is suffering from fibro. She talks about it in a documentary that had just been released in USA and I believe will be available in uk on Netflix later this month xxx

[Mdaisy in reply to Hazel_Angelstar]

Just about to mention the link to 12th May (you beat me to it lol ) which is also Nurse's Day We've been talking about Lady Gaga here > healthunlocked.com/fibromya...

Interested to hear your opinion

[Alibobs]

Lady Gaga has it. She's releasing a documentary on Netflix which is coming out on 22nd September xx think it's called Gaga: five foot Two. Xx

[house77]

I eat to much plus I gamble too, this is how I cope, not good I know! Think i have Aspergers too. I had my first assessment today with a nice lady who put me at ease.She thinks i have it, but got to wait 4 months for the main appointment to be Dignosized.

Big hugs to everyone xxxx

[pinot]

Aww its so hard living with fibro and if you have other health conditions it's even more difficult, I think many of us find ways to comfort ourselves with eating and other vices my wee knees is sweets, although I do try hard not to eat to many as adding weight increase is not productive to this knackered body. Long short is carry on but try to cut back on the treats especially the gambling, but hey no one said we're not allowed some fun. Today was a hard day for me 6 weeks ago I woke up with excruciating pain in my Achilles tendons and the pain is unbearable whilst trying to walk so been resting it as much as I can result I ate a bag of Thornton fudge lol so it's fruit for me tonight lol and tomorrow I will try to eat healthier. Meanwhile I shall have to be patient with this Achilles tendon how can you got bed without anything wrong with my Achilles and wake next day in agony anyone else have this problem or could it be linked to fibro. Ty for allowing me to rant hope you all feel as good as is possible with fibro xx