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[Royo]

My wife is going to see a specialist for tests. We both will not be surprised if it is fibro.

So has anyone got some pre diagnosis advice and tips. She is unable to get out of a chairs, stand or walk after back surgery so we need support

Thanks

[DanielleGemma]

Good Afternoon Royo and welcome to this lovely forum!

I have two bits of advice

1) is to check out our head site which I have included the link -> fmauk.org/

2) I wrote a post the other day, link attached as to things you wish you knew when you were diagnosed! Hope this helps! healthunlocked.com/fibromya...

I hope both you and your wife are okay xxx

[Mary-intussuception]

Do you know what tests she is having?

[Royo in reply to Mary-intussuception]

She is waiting to see a Rheumatologist after having blood test from GP all was ok. But it had muscle wastage high showing.

[Hidden]

Not wishing to burst your bubble Royo there are no blood tests or scan that prove fibro, its all down to what you tell the rheumatologist on the day, he will take bloods to eliminate anything else but dont be surprised if they are all negative. He might have a poke at some of her pressure areas like her upper back, ribs, leg muscle, she may only have fatigue if this has come on the back of surgery.. I would make yourself a word document of everything she can/cannot do, how she sleeps or not, can she use the loo alone etc. dont leave anything out however embarassing- this word doc will also help you if you go down the road of applying for PIP or ESA.. Good luck I really hope she hasnt got fibro.;

[Cape_Cod_Sharon]

That was a really helpful reply caz-54 and I hope Royo heeds your advice to create a document of all of his wife's complaints/ailments/aches and pains/sleep disturbance etc. Every bit of information can help the Dr. make an accurate and CORRECT diagnosis.

Good luck Royo, I hope your wife does not have fibro [only because it is debilitating and everlasting] and hopefully she gets a diagnosis that can be cured. Have a lovely day.

~Sharon

[Dizzytwo Moderator]

Good afternoon Royo It's nice to meet you. I am so very sorry your poor with is in so much pain. How long a go was her back surgery may I ask ? I am not sure why you think she may have fibro. If the surgery was recent I would expect you dear lady wife to experience what you describe above. What does your GP have to say about her recovery time from when she had her surgery.

I hope both of you can find some answers to your questions. Does your wife see a physio for her back since she had surgery ? Maybe you will know more when you have seen the specialist I do hope so. Please feel very welcomed to our group xx

Mo

[Royo in reply to Dizzytwo]

Surgery was just over 12 months. She was able to walk about 8 yards with a frame. For a few months after but fell a few times. The last time was a hard one and the surgeon who done the back had a MRI which came up clear ?

She was having private physio once a week. But this is once a mouth now. A few months ago ago she had NHS 6 week help . Physio twice a week, mindfulness etc which lasted 6 week. The GP gave her a blood test and said the only thing wrong was muscle wastage. So referring her to a specialist .At the moment she can not stand under her own weight at all . No walking at all. Gets tired so easy, with no energy to do anything.

[Dizzytwo Moderator in reply to Royo]

I am so sorry to hear how your wife is suffering. I can understand how she is finding it hard to walk or stand with muscle wastage. Does your wife take medication for this. Has she been put on an exercise program ?

I know it may sound strange to ask about exercise when the poor lady can not stand up. But from what i have read any type of mild exercise even from a sitting position is better than none.

What does your GP recommend your wife should try and do to help slow down any further muscle wastage ? As she seen the specialist yet? Please keep us updated and send our kindest regards to your wife.

Mo

[Royo in reply to Dizzytwo]

Thank you I will keep you up to date. We do exercises while see is laying on the bed. We got an electric chair two weeks ago to he help her up and into her wheelchair. She has started to use it to hold herself up with feet on floor so her weight is on her legs. She feels the benefit of this because it’s the closest she can be to standing. GP has not given exercises physio has. While sitting she rolls a ball under her feet and uses a Tens machine every day. Sorry forgot to say she has had a dropped foot for years due to the spinal damages before the operation.

[Dizzytwo Moderator in reply to Royo]

Sounds like your wife is on a sound plan Royo good for her for trying. It is good for us all if we can keep moving if it's only small steps at a time. I am a wheel chair user myself. I find the tens machine very helpful. And just getting out of a chair and sitting back down is exercise.

Any time you need to chat or just join in our banter please do. I know how hard it can be when your a carer my husband is mine. It can be a very hard job and sometimes isolating when your loved one needs constant help. I hope you both enjoy the rest of your day

Mo

[Fallabella]

Hi Royo, good to meet you and sorry to hear of your wife's suffering.

It looks like you've already been given some good advice so I shall just say welcome and see you and maybe your wife too soon.

Hugs xxx

[Mary-intussuception]

Hi again Royo.

I see from your profile that you have an Underactive Thyroid and B12 deficiency. Do you know if you have Hashimoto's Autoimmune Thyroiditis? Have you ever had blood tests to check your Thyroid Antibodies TPO & Tg ?

This was also what I was going to ask you to ask your wife. Do you know what her actual Thyroid function blood test results were? With Hashimoto's bloods can fluctuate and be reported as 'Euthyroid ' on occassion (Normal). However they may only just be within range, with low end of range T4 and near top of range of TSH. Worth a check and both asking for TPO, Tg, FT3 & Ft4 to be tested. Your wife could also ask for levels of Vitamin D, B12, Folate and Ferritin to be tested.

Congratulations on your weight loss!

I just lost 4lbs in the last couple of weeks.

I have Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.

X🐥

[Royo in reply to Mary-intussuception]

Congratulations on your weight loss. I will check her results and reports back 😜

[Royo in reply to Mary-intussuception]

Hi some results for my wife blood tests are ( none mean a great deal to us )

TSH 3.47

T4 13.1

B12 224

Folate 5.7

Ferritin 12.5

Erythrocytes sedimentation rate 7

Thank

[Mary-intussuception in reply to Royo]

Hi again Royo.

It would be helpful if you could add the normal ranges of each blood test. However the B12 looks very low and the Ferritin looks very low.

Has your wife been prescribed any supplements? Has GP mentioned testing for Pernicious Anemia?

Has your wife ever looked at the list of symptoms of Underactive Thyroid on Thyroid UK to see how many she has?

🐥x

[Royo in reply to Mary-intussuception]

We will look and I will get the range and post it

[Royo in reply to Mary-intussuception]

To find the result on the long list what do I look for on for the Anemia result ?

No GP has not given any supplements and will not take anything until specialists tests her afraid they will mask any tests.

Angel 3

TSH 3.47 (0.30-4.40 )

T4 13.1 ( 9.0-19.1 )

White cells count 6.4 10*9/L (4.0-11.0)

Red cells 4.85. 10*12/L (3.80-5.50)

[Mary-intussuception]

Sorry Royo.

Been unusually extremely busy. Now have two hospital appointments today. Will get back to you tonight.

Do you have the range for Ferritin as it looks awfully low and B12? Following the Ferritin did her GP do full Iron Panel? Did GP say anything about B12 or prescribe anything at all for anaemia. Is she under a Haematologist? If not would GP refer her.

I am not medically qualified but these two look low.

TSH is high if she does have Hashimoto's Autoimmune Thyroiditis. So she would need to ask for Thyroid Antibodies blood tests (TPO & Tg) to find out. If they are raised then she does have Hashimoto's.

X🐥