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Foggy's "Invisible Illness" Support

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Hi all x

Loopylou1411 profile image
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Been a member of the wonderful fibromyalgia club now for three year, depression and anxiety for twenty years since my knees started dislocating and it got worse ten years ago when my spine prolapsed. Just wanted to say hi to all as am on the anxiety site and have contact with some brilliant and caring people.

Am currently in a bad way for five days now my flare up is the worst I have had and have lost the use of my legs and left arm. I have tried all my usual ways of coping, meds, showers, hot and cold treatments, massage, but nothing is helping, my gp is baffled so was wondering if anyone had any other tips? I feel such a burden on my kids, parents, friends and wonderful boyfriend whom I have been seeing for eight months now, it's scaring him now as usually I have a bad couple of days and then climb back to my usual pain levels, stress has been high for a while but through it I kept going now its all calmed down I have collapsed In a heap. My bis is shocking and my skin is on fire too I am so bad no one can even touch my hand. Any help would be amazing... I hope I can soon be there for you all as I try to be there for all around me. Hugs Louise xx

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Loopylou1411
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Marz profile image
Marz

....Hi - I'm normally on the Thyroid forum and have been active there for 18 months or so. There are loads of suggestions I may have for you but it's such a lot of information and I do not want to add to your burden. Take a look at the Thyroid forum on Health Unlocked and look for Shaws in the Directory and she will have lots of links to Dr Lowe as he was a great believer in Fibro/CFS/ME being connected to low T3 and therefore a metabolism problem. Sadly his website is inactive at present as it is in probate - but Shaws points you in the right direction. You can also look for Fibromyalgia on the tags.

I too was diagnosed with Fibro around 13 years ago and on moving to Crete in 2004 I was diagnosed with Hashimotos - Auto-immune Thyroiditis in 2005. I have made great progress and am now free of fibro pain.

How is your B12 status - no good doctors saying you are normal - your blood result needs to be at the TOP of the range. Check out the videos on the website b12d.org Sounds as if your symptoms could well be related to B12 deficiency which can be a serious problem.

My suggestion would be for you to have the following tests asap..... TSH FT4 FT3 Anti-TPO Ferritin Folates B12 VitD Iron. You may find resistance from your GP but if so then ask what is causing your symptoms.....you are also entitled to have copies of all your blood test results.

Please ask if you have any questions and I will do my best to help. It's a long and rocky journey but one worth travelling...........I am not medically trained but have an impressive medical CV and survived !!

W3ndy2159 profile image
W3ndy2159

Totally agree with Marz suggestion of looking at Thyroid forum. They are brilliant. I am on that site too. Have you tried "Biofreeze"? Brilliant product-like deep heat etc, recommended by chiropractors and physios. :-) x

Loopylou1411 profile image
Loopylou1411

Thanks x my gp is now just offering pills to aid the symptoms I get but no real solutions as I feel she is overwhelmed. I am on the list for ligament reconstruction on one of my knees yet again so she keep focusing on that more than me as a whole. I feel I am seen a budget buster for the surgery and more test are seen as more cost where others need it. I am now trying to be positive about the day ahead as I need to find a purpose each day, and I also have my girl dog due for surgery as she has cancer lump again so I think I will bath her and pamper her today to show her I love her. Have a great weekend and keep smiling apparently its my best feature xx

Marz profile image
Marz in reply toLoopylou1411

...as a dog lover you may well relate to the following ! When my dog was diagnosed with a damaged cruciate ligament I researched her problem on the net and was quite amazed when I found a piece relating to Hypothyroidism in certain breeds which made them more prone to ligament damage ! ( to do with inflexibility in muscles when T3 is low which in turn stresses the ligaments ! )

Just a year later she lost her tail hair and most of her face hair too and now takes thyroxine - T4 - in huge amounts. Is much more the dog we remembered in her younger days. Could it be the same for humans I ask !!

You could always have the tests done privately that I suggested earlier - again the Thyroid Forum will give you all the details you require. Diverting your attention onto your dog is wonderful but does not get the job done in sorting out the underlying causes of your problems. To reply to me click onto the blue - Reply to this - otherwise I will not see it.

Loopylou1411 profile image
Loopylou1411 in reply toMarz

Will promise to look into it, I tend to put the kids and dogs first, when they need things doing I drop my plans and appointments to help others, it distracts me but I realise it doesn't help in the long run. Glad your dog is doing well, they mean so much to us all, they never judge and always willing to have a cuddle. I have three as when I got told not to work again I decided I needed to feel I had a purpose so I started rescuing dogs they make me get up even when the pain is bad. They make me feel I still can do something good.

Marz profile image
Marz in reply toLoopylou1411

....did you look into it ? The connection between Fibro and low thyroid hormones ?

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