Fibromyalgia and thyroid, I'm new to this site

[Carolha]

Hello, I have been a member of the lupus site for a few months now but this week I was diagnosed with fibromyalgia not lupus. I was advised by a member on there to join this site and not sure why. One of my questions was, the pain clinic consultant is thinking of giving me an infusion in the new year and I was wondering if anyone else as had this done. What effects does it have, well any info at all. Stuck in bed today as I'm in so much pain! X

[MaryF]

It was me by the way! MaryF x

[Carolha in reply to MaryF]

Thank youMaryF, feel I need all the help I can get at the moment. Much appreciated X

[MaryF in reply to Carolha]

Hi there have a look around the charity website for symptoms of both Hypothyrodism and also Hyperthyroidism it may well be like a light going on! thyroiduk.org.uk/tuk/index.... MaryF x

[rosetrees]

Fybromyalgia is often a symptom of hypothyroidism and/or adrenal problems. Have you had a full set of thyroid related blood tests done? If not, ask your doctor to test your TSH (thyroid stimulating hormong), T4, FT3, iron, ferritin, folate, Vit B12, Vit D and Thyroid Antibodies.

It's absolutely vital to ask for a print out of the results, with ranges. Then come back and post the results here.

[Carolha in reply to rosetrees]

I feel like a pin cushion I've had so many tests done. I know my vitD was very low and I am now on supplements. I will have to check. Thank you x

[shaws Administrator]

These are a couple of links. The website is archived as Dr Lowe died last year and he is such a loss to all of us who suffer. He was an American. Dr Skinner (RIP) (British) was also another who began the World Thyroid Register as he always treated patients as he was taught (UK) but was for ever being hauled before the GMC because he treated patients.

web.archive.org/web/2010103...

web.archive.org/web/2010081...

On the first links there are other topics at the top of the page which may interest you but some links within many not work.

worldthyroidregister.com/de...

[Carolha in reply to shaws]

Thank you, having a bad day, concentration level 1, pain level 10 and self esteem non existent! I will take a look as soon as I feel I can take it all in.

Unfortunately, although my husband tries so hard, we've had an argument today as it adds so much pressure on him, he is 65 next year and not finding it easy. I've always been active and able to carry on but this year it's hit me like a brick wall. I've found it hard to come to terms with too!

Thank you all for all your support

[shaws Administrator in reply to Carolha]

Don't worry. You will get better and being ill puts a great strain on relationships as sometimes the person is worried about the person they love, as according to the doctors there is not much wrong with us. So the doctor either thinks it must be our imagination or depressed, etc. etc. etc.

I could not believe I felt even worse on medication than before I was diagnosed but am fine now, thanks to being helped by Thyroiduk.org. There wasn't a forum at that time and it has been very successful. Lots of people want to know why they are not recovering as we would expect to once on medication. Everyone is different and with different clinical symptoms etc.

Maybe your husband can read the links for you as it means they can also understand a bit of what goes on and sometimes misdiagnosis etc.

Regards.

[Jillymo in reply to shaws]

Hi Caroline,

I have just noticed you have low Vit D what medication are you on for it, calcitriol or alfa calcidol by any chance.

What are your calcium results.....If calcium has not been checked it is 'very important' that they do one.

With out a good level of vit D the sunshine vitamin that we get from the sun the body can not store calcium.

Without calcium you can become 'very poorly' I have Hypoparathyroidism so know only to well about this one......if your vit D is low your calcium would be the same. X

[Carolha in reply to Jillymo]

Forgot to tell you I'm on colcalciferol 20,000 IU 1 every two weeks. Xx

[Jillymo]

Snap i have the same but I have never heard of this infusion ! what is it you are being given in the infusion ?

Fibromyalgia is a strange one and affects people in all sorts of ways with pain, weakness, tingling, burning sensations, all sorts of nastys, I think worst of all is the brain fogging it makes me absolutly useless at doing anything.

I get burning sensations in my legs with it, I can no longer stand the heat due to the inflamation throughout my body.......so I always feel warm.

I was convinced I had lupus after a boarder line test result for lupus, may I ask if you have arthritis the two often go hand in hand.

Sounds like you have a good consultant, I was diagnosed & left to get on with it......in fact the consultant did'nt ask to see me again.

I hope you feel better over the xmas period so that you can enjoy the festivities, i'm off to my sons for lunch exmas day. Big hugs from me I know how your feeling and it is not nice.

Jillymo x

[Carolha in reply to Jillymo]

My Rhuemotologist discharged me back to my doctor. I was referred to the pain clinic consultant over something entirely different. My gallbladder op went wrong in August, I have nerve damage and bile flow as well as other problems. But, when she saw my diagram of where I hurt and the levels of pain in each area, she went through everything with me, it took over two hours. I am not sure what this infusion is, she only told me it can take hours and it depends on the individual how long it takes. She said something about it helping to rebalance my system. I will be called back early in the new year and I will let you know as much information as I can.

I don't have arthritis but both parents do and my eldest daughter who is 24 as just been diagnosed with dermatomyositis! So my pain consultant said autoimmune diseases seem to running in the family! Xx

[Carolha]

Thank you, I will have to check x

[Carolha]

The surgeon damaged my common bile duct, I had a bile leak, had to have a stent fitted and a sphincterotomy as well. I may have to have my bile duct reconstructed!

[Carolha]

I have checked my medical notes and TSH is mentioned but no others. Should I ask my doctor to do these, I hate telling my doctor what he should be looking for! X

[Carolha]

Ok, I will talk to him and see what he says. Thank you for all your help x

[Jillymo]

Hi Hun,

I cant say I am familiar with colcalciferol is it given by injection every two weeks ?

May I ask are you in the uk so I can get some idea what area your from........i'm in the southwest, swindon, wilts in the uk.

Have you ever had any thyroid surgery ? I know you have had surgery on the gallbladder that was not plain sailing that has left you with problems........like me your middle name is not lucky.

None of us like to question our Gps or consultants but you need some answers as to why your having to have colcalciferol.......are your parathyroid glands not working properly ?

Is your calcium in the correct margin or is it to high / to low ?

It is your body so if your feeling unwell you need to find out why.

I'm going to look up colcalciferal out of interest.....it is not one I have been offered mine is little caplettes I take daily.

We are not getting any younger & a little quality put back in our lives is what I wish for xmas.

Get your thyroid results & pop them on here for others to look at.........some on here know what they are talking about when it comes to blood results.

Ask for copies of all results to be sent to you so you can keep a record.

Merry Christmas from Jillymo

[helvella Administrator Thyroid UK in reply to Jillymo]

Cholecalciferol is simply vitamin D3. Have a look here:

en.wikipedia.org/wiki/Chole...

It is usually taken as a tablet, capsule or one of many other available forms. Rarely injected in the UK and unlikely to be every two weeks.

[Carolha in reply to Jillymo]

I live in South Holland area in Lincolshire, I go to see specialists in Peterborough City Hospital and I have an appointment at Addinbrooks in Cambridge for my gallbladder issues.

I never checked on my medication I just take it as advised by my doctor for low vitamin D! I'm going to read the link from Helvella who I would like to thank for the support given. Thank you x

[Carolha in reply to Jillymo]

I also forgot to mention I have chronic kidney disease stage 3a it's stands at 54% at the moment x

[Jillymo]

Hi Hun,

I'm not sure if i'm replying in the right box but here goes........you say your in holand at the moment.......what nationality are you ?

The reason I am asking is many that come from hot climates & move to places where they dont get as much sun get Vit D dificient because we get Vit D from the sun so when they move to a cooler climate they dont get so much vit D so get low on calcium.......am I making sense ?

What your on is the same as I take it just goes under another name I looked it up.

My concern is your kidneys with this medication, may be that is why you only have it every two weeks.

I am not sure how much your dose is compared with my 250nanograms twice a day........what I do know is it can damage the kidneys........how long have you been taking it ?

You did'nt say if you have had thyroid surgery in the past........I hav'nt had surgery my parathyroid gland problem is genetic my son also has it.

Your like me a complicated case i'm so glad your being seen at Cambridge & will be

interested to hear how you get on.

What is your weight doing are you ballooning out like me ? One tip my friend is to drink plenty of water I try & keep a glass on the side all the time, you really must ask why your on this medication.

Take care.......Jillymo x

[Carolha in reply to Jillymo]

I am British an I live in Lincolnshire, England but I live in the South Holland area, where the tulips and daffodils grow near Spalding. I haven't had any trouble with my thyroid before so no operation. I had glandular fever over 30 years ago if that counts. I too have a glass of water with me all the time as I get a dry mouth all the time. I've been taking my medication for over a year as I was deficient in vitamin D. Even though I go outside a lot. I take a water tablet for my kidneys to stop water retention but I lost over 2 stone due to my gallbladder operation. I will let you know how I get on in Cambridge! Wish me luck I'll need it! Xx

[Hidden]

Hi & welcome

When you say infusion, infusion of what? B12? Have you had Thyroid tests? TSH FT4 FT3 antibodies?

After my partial Thyroid op my tiredness and pain were apparently then CFS/ME (Although I believe it's mostly Hypothyroid symptoms) - but since I've found I was low in Vitamin D (and recently had B12 tested) & supplemented the pain has eased and I do feel much better. But everyone's different.J x

[Hidden in reply to Hidden]

Sorry - I thought this was a new post - I must remember to look at the date! Good luck in Cambridge J x

[Carolha in reply to Hidden]

no problem. Happy Christmas! X

[Hidden in reply to Carolha]

Some info about Vitamin D..... Merry Xmas!

healthunlocked.com/thyroidu...

[Jillymo]

I went to Spalding many years ago by coach to the market in my happy healthier days.

Glandular fever as far as I know would not damage the parathyroid glands but I will have a closer look at that one.

I'm convinced I have Lupus but the bloods come back in the correct range yet some on here have been diagnosed without positive blood results.

It seems to depend on who you see, not many consultants go by the symptoms in fact not many recognise the symptoms.

It would be helpful if you could find out why you need the calcium every two weeks,' if & when you ask dont accept the answer of 'your calcium is low'........the next question is 'why is my calcium low'.

It will be interesting to know what this infusion is...........ask what & why your being given this infusion........also what is in it after all it is your body.

I get pain with the fibro myalgia, my blood results keep coming back with high inflamation levels it is a horrible one to have to live with.

The brain fogging makes you feel as if your going around the twist

The over heating gets me down & I now cant tolerate the summer heat.

It seems the slightest thing you do all the mucles hurt after the activity.........nobody understands unless they are a sufferer.

I used to be able to walk miles....a few yards is my limit now.

I pray you get on well when your seen in the new year. Jillymo x

[Carolha in reply to Jillymo]

Sounds as if we have the same problems! I only moved to this area last year. I come from Yorkshire originally but love it here, it's so open and you get huge skys. It has helped living here! I will ask what the infusion is, I take my husband every where I go now it's like having a responsible adult with you all the time - lol but seriously I don't know what I'd do without him.