I would really appreciate some advice please. I am not expecting a diagnosis just an indication of whether I am being paranoid or not!
I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome three years ago. This is what I experience:
Frequent and severe pain that is usually in my chest, rib cage, lower back,abdomen and all down my arms in to my fingers. I have frequent episodes of Costocondritis.
Extreme fatigue. Not tiredness but a deep and debilitating fatigue when I often can't even think straight.
Shortness of breath. This is sporadic throughout the day. Its worse in the mornings.
For the last three months I have needed to urinate all the time. As soon as I have been I feel I need to go again. This is destroying my already broken sleep. If I try and hold it the pain in my abdomen and lower back is severe.
I often have a temperature for no apparent reason. At other times I feel so cold its like my bones are frozen.
Hair loss - when I comb my hair lots of it comes out. I have very thick hair so understand I will lose some but hair loss is recorded on my medical notes.
High blood pressure.
Depression and anxiety.
Poor memory.
My GP has struggled to manage this. I have recently been prescribed Pregabalin for the pain which is having no effect whatsoever despite an increase in dose. I have just been referred back to Rheumatology.
Is it paranoid of me to worry about it being Lupus? It's very much in my mind as my mum was diagnosed with Lupus in her forties and then was also diagnosed with Churg Strauss Syndrome. I have no idea if Lupus can be hereditary. I did have a blood test which I was told was for Lupus two years ago and the GP said it was fine.
I would really appreciate any insight/advice. Sorry for the long post and thank you for reading!
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Oakmoss
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What you are describing could fit with many autoimmune disorders - including CFS/fibro. Were you diagnosed by a rheumatologist or by your GP? As far as I am aware, you cannot diagnose or rule out lupus on the basis of a single blood test and it is right you should be referred back to rheumatology.
Has the frequency/dysuria been investigated - because it should have been?
Thank you very much for taking the time to reply to me - I appreciate it.
It was a Rheumatologist who diagnosed the Fibro.
No matter what I present at the doctors with it is attributed to the fibro. For the going to the loo they did a urine test and blood test which they said was fine. The GP won't investigate it further and has just put it down to the fibro
I am sick of being in pain all the time and being so fatigued. What rest I was getting has been disrupted by having to go to the loo all the time. I am also getting frequent chest infections which take weeks to shake off and usually two courses of anti biotics.
Hi Oakmoss, hey moaning is understandable. I'm sure we all get where you're coming from in that way - being in constant pain and not getting any helpful answers or relief from our GP is discouraging and does get you down. I re Kon I could go in with a broken leg and it would be put down to fibro 😬 I was going to the loo 3-4 times a night right up until I had a hysterectomy a year ago and turned out my uterus was completely glued to my bladder with adhesions and my tubes were as swollen as sausages. So THAT wasn't fibro. But it took me 3 years of constant visits to Dr and frequent hospital stays to finally figure it out. Be persistent xx
3 years?? Bless you - that's awful At the moment I am going to the loo about every 20 minutes. I have told two GP's now but according to them its the fibro Why do we have to fight so hard just to be listened to? It makes me so angry!
Like Leemaree - they will try to put EVERYTHING down to fibro and I think it is a greatly overused and abused diagnosis that then blinds them to the possibility of another illness.
Just because your urines don't show things DOESN'T mean there is nothing going on - they need to do a cystoscopy to establish that. Otherwise they are effectively saying it is all in your head (nothing new there then with a/i disorders).
Have you any chance of seeing another GP? And I would be insisting on a referral to urology.
Hi Oakmoss. You've been given some very good advice and I know from reading on here that getting the right diagnosis can be very lengthy so perhaps having a private Rheumy's ear for 45 minutes or so would be money well spent. You can still have your NHS appointments too.
Have you considered requesting a blood test for inflammatory markers when you're having a bout of costochondritis? A raised result would add weight to your case.
I get a lot of chest symptoms too and am generally much worse in the mornings. My GP is massively supportive but as for actually 'managing' things, these AI conditions (by her own admission) are way beyond what they are taught in medical school. Could you perhaps see a different Rheumatologist this time? Someone with a fresh approach might be a better bet. Some rheumatologists are better at treating the 'person' rather than the blood test results.
You could ask for a bowel and bladder referral for assessment of the bladder issue. It could be fibro or it could have another causes that may not even be autoimmune. Bowel and bladder service would then be able to instigate appropriate investigations or additional referrals as appropriate. If I was being disturbed that much I would want it investigated. That's the route my GP sent me down, through which. A neurogenic bladder was diagnosed.
The shortness of breath could be investigated quite simply in the surgery with a spirometry reversibility test to begin with, just as a baseline test. This might rule in or out some of the non autoimmune conditions.
If you keep a symptom diary and try to be as descriptive as you can about the exact nature, location, duration, aggravating or ameliorating factors as you can. Record your temperature if feverish. Photograph any visible symptoms like swollen joints (always show a comparison photo of the non swollen one, rashes etc.. This will be helpful when you see the rheumatologist. Good luck and ask the question ' what objective tests are being done to justify the fibro label over and above anything else, and how have differential diagnoses been ruled out'!
Thank you for your advice which I really appreciate
The two GP's I have seen are both adamant that all my symptoms are down to the fibro.
I feel so unwell today that I have made an appointment with a private Rheumatologist first thing Monday morning. We can't really afford it but there is no way I can wait over two months for an NHS appointment. I am really hoping that the consultant I see is helpful and will listen. I have written down all my symptoms (short bullet points), family medical history and my current and past medication.
I know this can be a frustrating time, lots of symptoms without a solid diagnosis and no treatmwnt plan to resolve. I too have crazy symptoms and no firm diagnosis (low grade fever, rashes, seollen lymph nodes). Treatint mostly with diet and supplements. Found a good integrative doctor. I hope you can get some results soon. I just had a comment actually about your costochondritis. My cousin thought he was having a heart attack one day a few years ago and he went to the ER… The doctor said he was not having a heart attack but costochondritis. He recommended that he go on a gluten-free diet… And within a few weeks the diet resolved the costochondritis. I have talked with him recently and he says he occassionally a very mild symptoms but remaining gluten-free resolved most of the severe pain. I have had bouts of neuropathy … And going gluten-free also resolved those. it was difficult at first, but I have been that way now for four years and it's easy. I am reading a book called the Wahl Protocol that you might find very interesting. This professor who is also a doctor addresses her MS treatment and autoimmune disease. She also has a Ted talk called "Minding your Mitochondria" that is quite interesting Best of luck with everything.
I think I was diagnosed with Fibromyalgia by a Rheumatologist after years of pain pill popping , and whatever I told him he just shut me down , as I suffer from arthritis as well , I was telling him the pain I get and asking if it was arthritis , he said no , I left feeling that he thought it was all in my head , as the pain I get is bloody awful especially the pain in my chest which makes me think i'm about to have a heart attack and the headaches arghhhhhhh , I too have poor memory
depression and anxiety and i'm sick of having to take even more pills , so after all the years of going doctors , hospital appointments , MRI's , x rays physiotherapy , now they tell me it's Fibromyalgia
This post is exactly why I despise the diagnosis of Fibro. I was given that diagnosis by an idiot rheumatologist and fought hard until it was removed from my diagnosis. Once you are labeled with it, doctors have an instant cop out for every sign and symptom you have. I don't doubt that there is something to it, but fibro cannot become the instant reason for pain and suffering. I would love to have that label totally removed from the medical world and force doctors to actually work and think to find legitimate reasons for these issues. I hope you have/had a productive visit to a new rheumatologist.
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