I got fibromyalgia tacked on to my diagnosis last year without even being seen! At the time I was suffering from the severe side effects of sulfasalazine. The side effects were so bad I sent a yellow card.
Not one person listened to me. I was in agonising pain from the sulfa. I feel really cross that fibromyalgia has bee. Dumped on my notes, when I clearly do not have it. I'm going to ask for it to be removed.
I was actually asked by my GP yesterday if I was taking leflunomide for the fibro! Seriously! I wouldn't mibd if I actually had the disorder, but who takes leflunomide for fibro?!
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Nettac
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I have an undergrad degree in Sociology . The power of labels is unimaginable. Hence my desire for an immediate name change. People go with what they think they know. There are 650000 people in my province alone. The minute you say Arthritis a switch goes off. They are no longer listening. Now I no longer volunteer information, I wait until they ask. This makes my life easier but does not correct the problem. I have worked with insurance companies for twenty years, labels matter. It means the difference between coverage and no coverage. MS is classed as a critical illness but not other autoimmune disease like RD or Lupus and yet the mortality risks are much lower for MS. The difference is it is labeled a neurological disorder. The sooner they stop seeing RD as Arthritis vs Autoimmune Rheumatic Disease the sooner that will change.
They continue to class cardiac and cancer as comorbidity when in reality they are a result of RD. Perhaps my purpose is to address these issues. .?
We do not look sick ? They see hair loss or weight loss as signifiers of illness yet what they are is drug reaction. Cancer does not create hair loss, vomiting etc chemo does.
My Rheumy once said to me ,"it could be worse like cancer". Wake up call doc, unlike cancer patients we often get no coverage, understanding or support. Cancer remissions mean no more drugs and no more pain our remission means rest up for the next round(flare). There is no cure ?
How can you plan anything when your health can change radically from one day to the next. I spend all of my time negotiating pain management.
I have been a financial planner for twenty years and have insurance up the wazoo lol I cannot collect it until I get the right label. Fortunately it is simply a matter of time as heart and cancer enevitable . I have document from cancer agency indicating tclonal non Hodgkin lymphoma. The point being that people recognize you are ill when you say cancer but do not grasp your illness when you say arthritis. The cancer is only a byproduct of autoimmune disease or 'treatment'. It is more than soar hands for some it is all organs or systemic. But words, labels have power.
I was misdiagnosed with Scurvy by a dermatology professor from photos of a rash a few years ago. It was actually a reaction to a Raynauds drug, Nifedipine. When I relocated I explained to rheumy no.2 and it came off the diagnosed conditions list - only to reappear last year with rheumy no3.
I wrote a letter to him asking for it to be removed but it wasn't. I asked my GP who said the only person who could remove it was the person who added it. Finally I saw the rheumy registrar who had added it so I asked him to kindly remove it - particularly after a discussion about how to treat my Raynauds. He said he would so I'm waiting for the letter from new rheumy no.4 to see if it's still there.
Having Scurvy written on my notes (when much of my diet comprises fruit and veg!) is really embarrassing! But then I'd be equally furious to be diagnosed with Fibromyalgia without being examined so I completely relate.
I had an allergic reaction to Sulfasalazine. It didn't cause pain but it was anaphylaxis.
Sulfasalazine cause rapid pulse, agonising pain, racing heart, cough and psychotic depression. I nearly topped myself.
When I went to see GP in a terrible state complaining about agonising pain, I was told I couldn't be in pain as I'd had a steroid shot three weeks previously. I was In tears, shaking and confused. She must have called my rheumy and said this. Hey presto....fibromyalgia!
Not one person queried the drug. I figured it out myself. How someone can give a diagnosis with examining or even seeibg patient, is beyond me. An incorrect diagnosis can scupper ones chances of correct treatment.
Really sorry you are having such a bad time on Sulfazalazine. I had to come off this drug several years ago, I became very withdrawn and couldn't get my words out. Rheumatologist said straight away it can cause problems like that for some people and took me straight off it.
It is truely shocking that you have been 'diagnosed' with fibromyalgia during a phonecall between your gp and rheumy without an examination or any discussion with you. I hope you will be able to discuss this at your next Rheumatology appointment and get things put right.
I'm so sorry to hear of your misdiagnosis. I had a sort of similar thing. My sister had a nasty kidney infection and, somehow, this was put on my record. The GP refused to remove it. I already have scarred kidneys from childhood illness so it makes little difference to me but, flip, the wrong diagnosis? Gentle but firm persistance is a good plan. I was on Sulphasalazine. I had just started week four when the Rash started. I already had the fast heartbeat, fatigue, hacking dry cough, dreadful nausea, heartburn, depression and the brain fog. I honestly started to wonder if it was the start of dementia! I can cope with all sorts of ailments but I cannot bear itchyness. I stopped taking it and the rheumy help line confirmed it was the best idea. That was nearly four weeks ago and the tummy still hasn't settled properly but my skin is healing nicely. Next Rheumy appointment is tomorrow so I will see what the next step will be. Here's hoping you get that stupid record erased. Grrrrr
After 7 rheumys all saying fibromyalgia to me, I finally have one that will listen to me. i have loads of inflammation. There is no inflammation with fibro. Frankly I don't believe in it. I was put on Enbrel and i am getting some relief. Be persistent about having it removed.
Yes my inflammatory markers are raised, and bloods frequently all over the place. I've had swillen toes, bilateral achilles tendonitis, bilateral knee issues, bilateral hip arthrits and rib pain. Plus weird rashes, headaches with vomiting, deformed nails.
Do your ribs hurt to the touch like mine or by movement? I've also had costochondritis where it feels like broken ribs, a symptom of AS. Deformed nails could be psoriatic arthritis which rashes are also a symptom.
I have to say something here, Ginam, you may be lucky enough not to have fibro but that does not mean it doesn't exist. I find it extremely offensive when someone states they do not 'believe' in one of the main disorders I suffer from. I take it you are not a qualified doctor ? The millions of pounds being spent on research into this debilitating illness in America is just a what ? Joke ? Game ? Mass mental delusion on the part of all the dedicated doctors trying to find an explanation, a cure. Invisible illnesses as you must know are already very difficult to deal with, without thoughtless and offensive comments from someone in a similar painful and debilitating situation
I'm not meaning to be offensive to you or anybody else, but at the same time, I've wasted alot of money and time going to doctors that can't determine what the problem is and they just want to dismiss it as being fibro. I've suffered for years being misdiagnosed because of the fibro hype. I've read alot about fibro and its symptoms. I have fatigue, but it is caused by inflammation as denoted by having a high CRP. Not by fibro which inflammation is not a symptom. Doctors use the pressure point tests for pain and this is what they base my diagnosis on. Yes, I have pain where they touch my hips, but my entire pelvic bone hurts, not just the points where they touch. They can't seem to see beyond that. I don't get headaches or have brain fog which they don't even ask me about. So, how can these doctors diagnose me with fibro if I don't even have all of the main symptoms? I may not be a doctor, but I do work in the medical field and I do educate myself. I hope you are getting the proper help so that you get relief. Life is too short and precious to have to live it in agony everyday.
Shocking that you were misdiagnosed.As you say, you educate yourself.
You would know then from experience that you do not have fibro.
Having to drag yourself around with every muscle in excruciating pain, unable to sit.lie or even move due to ribs feeling as though you have been battered and walking upstairs on all fours after a day's work to name but a few.
I had these and more symptoms for years and carried on without a diagnosis.
Even after getting diagnosed I still ploughrd through until last Feb when I woke up and couldn't walk.
My sister has fibromyalgia, her experiences are very different to mine, and other folk I have talked to with this issue.
I know I don't have it. I do get a bit worried when this particular illness is given to so many people without a proper physical examination, and often when folks can't figure out what is going on.
I don't for one moment doubt fibro exists. Problems occur when everything is then put down to fibro. It then takes a considerable amount of time and effort to explain to doctors that you don't actually have the disorder once it's on your record.
In my case, I think it has clouded the fact that I may also have an inflammatory bowel disorder on top of PsA. Blood tests etc are suggestive of this, and I will now me seeing gastro.
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