Newbie here.

[lizzie1]

Hi everyone

I have posted a while back as I think I may have fibro.

I have an underactive thyroid and my symptoms do not seem to respond to medication (i have tried several). I have always thought my symptoms were thyroid related but am now beginning to wonder.

My symptoms are tender spots all over my body. These have been present for years but have got gradually worse. Very stiff limbs, dreadful sleep which does not refresh me, fatigue and dreadful balance/coordination problems.

I have been like this for 6 years now and am feeling very low. When I do sleep and try to wake up my head feels drugged and I have to fight to become awake. Some days my brain feels totally fuzzy, almost as if it is slowed down. I feel like I am wading through treacle mentally.

My question is this - I have read that fibro flares and dies down only to flare again. Well my painful limbs are constantly painful, I don't get a reprieve from the discomfort. Is this fibro?

I am taking Amitriptyline to help me sleep and thyroid meds.

Does this sound like fibro.

Thanks L

[Shadows-walker]

Yes sorry ,have you been offered a place on a pain clinic ,I have just completed one and it has helped me understand how fibro has effected my body ,it has been explained about the pain and fatigue pathways have been rewired and how we boom and bust,

I.e if I over do it it's not the next day I suffer its approximately 10 days later ,I now only do what I call one physical task a day ,the rest of the time I do do things but it is what I called pottering ,or one mental task ,if I drive to the shops that's one is one physical and one mental task done if I behave myself i am ok if I do more I will suffer for it my physical task is never more than for an hour an I can't rush if I haven't finished I still stop it will still be there tomorrow ,the pain clinic will also explain how are meds help or don't help and why ,it will teach you coping methods ,you need an open mind ,really to get past the first couple of weeks most on my course admitted that we were all thinking it was a waist of time ,but by week three it starts to fall into place ,you won't be good all the time know mater what you do but you can help yourself , I find that heat packs help me and relaxation , and music also to help with the sleepless nights audio books no TV and I try to stay away from iPad as that stimulates , hope this helps keep your chin up and try to find a positive that always helps,even if it's raining its feeding the trees ,take care shadow xx

[lizzie1 in reply to Shadows-walker]

Thank you Shadows-walker for your reply. The idea of a pain clinic is a good one and something I would take part in. I must admit that I am not terribly kind to me - I used to be very sporty and so I make myself walk each day. Sometimes its so awful that I cry whilst walking (the dog is used to it!!) I am so worried about not keeping my body moving. I am 56 and keep thinking you should be able to do this although some days I feel 80 plus.

You have a lovely positive attitude.

[Shadows-walker in reply to lizzie1]

Hi I am 52 I was also fit ,cycling ,sports kites ,I.e para foils etc ,the occasional dare to the vicar to absail down church tower , my dogs I would walk them at least twice a day ,now I use a mobility scooter so they get a good run , I was very much in denial until jan when my body stoped cooperating and would not let me walk across a room without what appeared a major asthma attack which I don't have , you have to find ways of living a new kind of life that is except able to you ,it's not easy I still have feel sorry for me days usually when I forget what I have learned but most of the time ,I am ok ,I find this site helps me tremendously as I have regular contact with people who genuinely understand and don't doubt my symptoms,my doctors are brill and understand my frustration as they now me ,I am not just a name on a computer screen ,they have taught me how to cope ,good luck and try to smile ever day Chris xx

[lizzie1 in reply to Shadows-walker]

I think I am still in denial. I kept myself fit, ate well and now my body is repaying me by falling to pieces.

I know I have to get past this way of thinking.

[Shadows-walker in reply to lizzie1]

Hi me again just a thought next time you make a post at the bottom of screen there are two spots one is next to every one the other is community you may well get more responses if you click on the comunitie one

It's really hard fighting yourself ,which you will now be doing on many different levels from mental ,phyisical and maybe in some cases family but if you are only hurting yourself , but when your ready it will all fit into place routine is good and support I live alone but my children contact me every day even from Japan and this site ,I have friends but they don't drop round now like they used to but I now prefer it that way .

Keep your chin up you will be ok just different

[lizzie1 in reply to Shadows-walker]

Thank you - wise words

xx

[Shadows-walker in reply to lizzie1]

X

[Bellaflowe]

Hi Lizzie,

Welcome to the forum I'm sorry to hear you're having such a rubbish time of it. Has your doctor ever tested you for anything else? The tender points, fuzzy brain and overwhelming fatigue sound like fibro, but there are other conditions which mimic those symptoms. What have you been tested for?

Suzy x

[lizzie1 in reply to Bellaflowe]

Hi Bellaflowe thanks for the reply. I have been tested for lots of things including Thyroid and Lyme Disease. My thyroid is underactive and have tried various doses of drugs but symptoms do not go away.

I have read that fibro waxes and wanes but my pain is constant and this puzzles me re fibro.

[Bellaflowe in reply to lizzie1]

Hi Lizzie,

Fibro can wax and wane for most people, but for me it is constant so everybody is different and symptoms do vary between patients. Have you ever been tested for Lupus? X

[lizzie1 in reply to Bellaflowe]

Yes I have been tested for Lupus and it was negative.

x

[Bellaflowe in reply to lizzie1]

I have lupus as well as fibro and I have those symptoms and more. It could be fibro though, the symptoms are consistent with it. What has your doctor said? Does he think it's just thyroid related? X

[Bellaflowe in reply to Bellaflowe]

Nevermind, I read your comment below! Definitely ask to see a specialist, it should help a lot. X

[TheAuthor]

Hi lizzie1

I am so sorry to read that you are suffering in this way, and I genuinely hope that you can find some resolution and relief to these issues. I would definitely discuss this situation with your GP or Medical Specialist to try and get a diagnosis one way or the other? As being left like this is not helping you?

I want to wish you all the best of luck.

All my hopes and dreams for you

Ken x

[lizzie1 in reply to TheAuthor]

Hi Ken thank you for your reply.

My GP thinks it is fibro but will ask to see a Consultant so at least I will know what I am dealing with.

[teddybear7]

I hurt 24 7 but sometimes it gets worse.

[maryharrison]

Hi Lizzie I was just the same and also have under active thyroid. I asked to see a rheumatologist and she said I had Fibro and sent me to Fibro clinic.

I understand the feeling of sleep fatigue and it is awful to feel like you're in a fog continuous. Make sure you've had your thyroid tests and you are not needing a higher dose.

[lucindajethol]

What dosage of thyroid treatment are you on? As on reflection all these symptoms were mine until I got proper medication ie correct dose. Now on 125mcg Levo which seems right for me so far.

[lizzie1 in reply to lucindajethol]

Hi there and thanks for the reply. I could not tolerate levo (awful headaches) so am now on 35 mcg of T3 only.

[lucindajethol]

Lizzie. Would you not consider giving Levo another go. What have you to lose. All I know is that my symptoms were so like yours until I got on the correct dose of Levo. I remember not sleeping well and getting up in a haze and dragging myself out of bed to go to work. Not to mention the awful pains in every joint of my body. I could,nt even take the frying pan off the stove without using two hands, my wrists and arms were so tender I was getting to the stage were I actually thought I had rhumatoid arthritis I felt so ill and did,nt know which way to turn but how wrong could I have been, because it was my underactive thyroid playing up. I am not a doctor but I would say If your case is not treated correctly your body will go downhill further and if you haven't already developed Fibromyalgia you may end up with it. Sometimes you can get headaches when taking new meds until they settle down. Anyway it is worth having your Thyroid tests taken again and if they come back negative take it from there. Start to look down other avenues for your condition.

[lizzie1 in reply to lucindajethol]

Hi again. I tried levo for 6 months and the headaches were relentless. I then tried Natural Dessicated thyroid again for 6 months but could not afford to keep buying it. The endo suggested T3 only and here I am on 35 mcg of T3 only feeling unwell. Had a few tears tonight. Just feel very low.

Have another blood test this week and then back to see the endo.

[lucindajethol]

So sorry to hear that you are still suffering Lizzie 1. We are all different and I Just wanted you to feel as well as I do now. Hope you soon get the right diagnosis and treatment to follow. Horrible feeling ill all the time.

Good Luck and keep smiling

[lizzie1 in reply to lucindajethol]

Thank you. I live in hope that one day I will be 'me' again.

x