Do I or Don't I?

Heychh

New member
Joined
Jan 8, 2021
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Morning. I'd be very grateful for your opinion's.
I've been a very tired person from my teen's.
I've had most of the below symptoms for over 10 year's.
Over the past few year's my symptoms have been getting progressively worse.
I've been to the doctor many times only to be fobbed off.
Over the past year I've found a really great Doctor who is adamant that I have Lupus.
Rhumatology do not want to know as they are not concerned with my blood test results and insist that I have fibromyalgia or CFS but say it's hard to diagnose between the two.
I'm at my witts end.
I need a diagnosis so that I can finally get treatment in the hope of feeling even the slightest bit better.

My symptoms:
Depression and anxiety.
Headaches and migraines.
Extreme tiredness.
Legs giving out.
Muscle weakness.
Muscle spasms.
Large Muscles popping out of my legs and chest area.
Shaking hands/cramp.
Joint pains.
Heavy/irregular periods.
Large history of miscarriages.
IBS and bloating.
Food not digesting.
Itchy skin.
Tiny blisters on skin.
Memory loss- short and long term.
Poor concentration.
Speech problems- forget what I'm about to say, say the wrong words.
Heartburn/Indigestion/Nausea.
Bruise easily.
Excessive sweating - head and neck.
Dry mouth.
Back pain - lumbar area.
Shooting pains - mid right side of back.
Heart palpitations.
Hair loss.
Sores in the nose.
Reduced kidney function.

Frequent abnormal blood test results:
Positive ANA (1:80).
High Creatinine.
High MCH.
High MCHC.
High Haemoglobin.
High White Blood cell count.
Low Folic Acid.
Low B12.
High Plasms Viscosity.
High Lymphocytes.

Whilst I agree that a lot of my symptoms could be fibro related, some do not seem to be related.
Any advice, particularly medical advice would be much appreciated.
Thanks for reading.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,052
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Over the past year I've found a really great Doctor who is adamant that I have Lupus.
Hello Heychh, I don't understand why you feel you are at your wit's end if a really great doctor is firmly of the belief that you have lupus. If you need a formal diagnosis, can you not get one from him? Also not understanding why, if you are diagnosed with lupus, you are seeking a different diagnosis. Maybe I missed something in your post?

Also, I am afraid I have to let you know that none of us here are doctors and we cannot give medical advice. We can, and are happy to, give advice on managing fibromyalgia, and offer lots of support.
 

Heychh

New member
Joined
Jan 8, 2021
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
I am at my wits end because I am still no closer to having a definitive diagnosis.
It's extremely frustrating having a G.P say one thing and the hospital say another.

My G.P thinks I have Lupus because of the positive a.n.a results and raised plasma viscosity but can not diagnose Lupus hence her referal to Rheumatology.
A rheumatologist has to diagnose it but they are unwilling to see me as they do not think I have Lupus looking at my blood test results and have suggested that I have Fibromyalgia or Cfs.
 

Drtohelpfibro

Member
Joined
Oct 31, 2020
Messages
13
Reason
Practioner
Diagnosis
00/0001
Country
US
State
WI
The Ana is very low and a false positive. The rheumatologist is likely correct (I’d say correct but I can’t without seeing you.) The problem is likely that lack of proper education, information, on fibromyalgia and it’s management . Most rheumatologist don’t like to manage it after the diagnosis and most gps don’t feel comfortable with it which leaves you in no mans land, appropriately confused and frustrated.
 

Heychh

New member
Joined
Jan 8, 2021
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
The Ana is very low and a false positive. The rheumatologist is likely correct (I’d say correct but I can’t without seeing you.) The problem is likely that lack of proper education, information, on fibromyalgia and it’s management . Most rheumatologist don’t like to manage it after the diagnosis and most gps don’t feel comfortable with it which leaves you in no mans land, appropriately confused and frustrated.
Thank you for your helpful response.
Here in the Uk we have a pain clinic. I am going to try and self refer and if that fails I'll ask my g.p to refer me. Looking at my options, it seems that is the only way forward.
Many thanks once again.
 

HappyGirl

Member
Joined
Oct 14, 2020
Messages
17
Reason
DX FIBRO
Diagnosis
09/2020
Country
CA
State
ON
I am at my wits end because I am still no closer to having a definitive diagnosis.
It's extremely frustrating having a G.P say one thing and the hospital say another.

My G.P thinks I have Lupus because of the positive a.n.a results and raised plasma viscosity but can not diagnose Lupus hence her referal to Rheumatology.
A rheumatologist has to diagnose it but they are unwilling to see me as they do not think I have Lupus looking at my blood test results and have suggested that I have Fibromyalgia or Cfs.
A Rheumatologist should see you to give a definitive diagnosis. Ask for a referral to a physiatrist to help with you pain too. I’m sorry for your struggles.
 

Heychh

New member
Joined
Jan 8, 2021
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
A Rheumatologist should see you to give a definitive diagnosis. Ask for a referral to a physiatrist to help with you pain too. I’m sorry for your struggles.
Thank you.
 

TJB

Active member
Joined
Aug 17, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hi,
You definitely need a definite diagnosis.
If Rheumy diagnosed Lupus then get go to refer you back to Rheumy because at very least you need to know exactly what type of Lupus and also ask for their help to manage it if needed. Never be scared to say you need help with and whenever there’s a vague response turn it into your need for positive need...ie don’t be fobbed off.

Go back to your GP re low B12 and Folate.....they need treating as can cause you many of your symptoms. Then needs following up a couple of months after your tablet treatment. How low was your b12 & folate bloods?

Remember that right now with COVID-19 Consultants are general doing phone consultations which is very difficult for the patient. Avoid if you can and wait to be able to be seen face to face, hopefully not too long away 🤞🏻.

Get your folate and b12 sorted as could help you hugely.
x
 

Heychh

New member
Joined
Jan 8, 2021
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Hi. Thank you.
I haven't had a diagnosis of Lupus but I have now had it confirmed in writing that I have fibromyalgia.
I've been on folic acid and B12 for 6 month's now. First with the jabs and now with the tablets as the B12 jabs didn't agree with me. Due for retest on bloods at the end of the month.
Currently waiting for a pain clinic appointment.
 
  • Like
Reactions: TJB
Top