I've been following this forum still but had to take a step back for a fair bit of time due to my heightening anxiety for my upcoming rheum appointment (which was yesterday).
I've been in what I would consider a 'flare' since 3rd July. On 2nd July I did some very light gardening and the day after started a migraine which lasted 3 days with sickness. Then came the exhaustion, pain, a mouth absolutely covered in ulcers (6 or 7 at a time - normal for me in flares) and even a genital ulcer - not had one of those nasty things in over a year. Also have random episodes of feeling feverish but no significant fever, swollen throat which is sore and swollen one day but fine the next. Basic stuff that I get with every flare. Also have proteinuria (2+, have been checking at work) and right kidney pain, I could actually palpate it yesterday it felt so inflamed.
Anywho, I go and see rheum last night who said there was absolutely nothing in my bloods. He ordered a full antibody profile for me and so on that basis said there was nothing else he can do and he's going to diagnose me with fibromyalgia. Last time he checked my tender points and I had none, so I dont' know how I can have this diagnosis. Similarly last time he also said it doesn't seem like fibro but that if he really can't make a decision he will be inclined to say UCTD which I thought was reasonable and fits my symptoms closer. My antibodies have previously been positive but because they were not with him and the ones he ordered were fine he is saying that's his diagnosis and he is sticking with it.
I said I wasn't happy with that and fibro doesn't explain my oral and genital ulcers, reynauds, chest pain and palpitations etc. He lowered his mask so he could smile (but more like a smirk!) and said "but as I've said, all your bloods are fine". I have gone private for all of this and have taken a considerable chunk out of savings for all appointments and investigations, only to be treated like I'm just seeking some heavy pain relief. He wants my GP to prescribe me gabapentin and I've just got off the phone to them and they refuse to prescribe it as I've gone private and no GP appointments to discuss directly with a doctor until august. The rheum has essentially discharged me.
And so I am lost, in a flare that I'm not getting better from, with no adequate meds, no answers. He couldn't care less that my antibodies were previously positive and refused to acknowledge that even though he took the print out of my specific results.
I don't know where to go from here. This has been going on for so long. Sorry for the long message but if anyone has any advice. As I said, I'm not getting anywhere with the GP and I'm really not in the mood right now to pay for a second opinion privately. (I only went privately initially as even with positive antibodies and clinical picture GP refused to refer me to rheum).
Any advice on what I do now is greatly appreciated. Thanks
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TeaandToast94
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You poor thing. Blood results are not everything when it comes to lupus. I myself have totally normal bloods, always have done but I am 100% diagnosed with ANA negative lupus but not one but two Rheumatologists.
You are quite right, your symptoms are NOT explained by fibromyalgia. The ulcers are very significant. I would take plenty of pictures if you can.
A phone call to lupus UK might help you get some information. I find that "you don't know what you don't know," sort of attitude helps me discover new stuff.
Also, it sounds like a discussion is needed with a good GP who can see your point of view re the ulcers etc.
I don't know what part of the country you live in. But I'm sure Lupus UK might be able to give you some names of Rheumatology Departments who might be more helpful.
On a practical note, it's my belief that GPs are obliged to prescribe (all and anything) if it's been recommended by an NHS Consultant. At least this is the case in England.
I think you should stand your ground on the Gabapentin, push your way past the receptionist and ask to - at least - speak to your GP. If this doesn't happen, ask to speak to the practice manager. Hope this works.
I agree that fibro doesn't seem to fit your symptoms, but what's in a name after all? Surely, all we really want is for our illness to be taken seriously and treated (with drugs if necessary) so that we can feel somewhat better.
I'm so sorry that I can't be of more help, except to say that many of us here understand what you're going through and we're here to support you in any way we can.
Sending gentle hugs,
🤗🤗🤗
Put it in writing. Stay factual. No personal comments about GP or otherwise just facts
Hi there. My heart goes out to you. I have lived this issue many times being diagnosed then undiagnosed. One says I have Lupus. Another says I have Bechets. Then it was just Lupus. Then UCTD and Fibro. Then Lupus, Bechets, Fibro and APS. Then back to UCTD. Then Lupus Bechets and Fibro. Then Fibro and “ hysteria”. Then no Fibro just UCTD. Then MCTD. After 11 years my new Rheumy has never seen me. I have had two telephone appointments, the first giving me hope, the second just five minutes with no answers. I have had no blood monitoring in 18 months. It is just appalling that we are treated this way. My only advice would be that if he diagnosed UCTD go to your GP and say you need a referral to a local Rheumatologist. I would also phone the Rheumatologist you saw and ask him to write you a prescription for Garbapentin then recommend that the GP prescribe it.I wish you so much luck with this xxx
Hi! Thanks for your message. Yes, I do have some experience with Gabapentin. To start, let me say I do not have any diagnosis as of yet - probable autoimmune disease or connective tissue disorder. My symptoms which only started this January are burning feet and arms, inability to regulate body temp, fatigue, muscle wasting, dry eyes, mouth, nose. My neurologist prescribed Gabapentin in April of this year. She had me go from 300mg/day to 1200mg/day pretty quickly. I had some awful side effects including slurred speech, hard to walk, inability to think clearer, and soooo tired. I thought it was just my condition getting worse. I ended up passing out at work and waking up to involuntary shaking of my leg. My dr encouraged me to stick with it and even take more, but after some research, I have decided to not take it any more. Much to my surprise, even though I had only been taking it for 7 weeks, I am finding it hard to stop taking it. I tried to half the dosage every few days, as advised by my dr, but I ended ip with a breakout of hives, heart palpitations, insomnia, and a splitting headache. I am now doing a slow taper, using water titration. It has taken me 8 weeks to go from 1200/day to 210/day. From 1200 to 300, my nerve pain was no better or worse, but my fatigue and foggy brain completely lifted! Now that I am below 300, my nerve pain is increasing. I have to decide whether to go back to 300 or continue tapering. My advice for anyone considering taking Gabapentin is to not increase quickly and to fully understand the side effects and possible difficulty in stopping. Once you start taking it, it is very hard to differentiate between your underlying symptoms and the side effects from the medication.
Hi. I’m sorry you have had a struggle withGabapentin. I never did. Perhaps some fatigue but now after 2 years(lupus has affected my spine) I have no side effects
At all. I agree we all need to be vigilant
About our medications. I had read gabapentin can be difficult to taper. At
60 something years old I’m grateful for
The pain relief and accept any blowback.
Good luck with your diagnosis. It is so
Difficult sometimes in the beginning. Best Regards Titters
There really is little the rheumatologist can prescribe without positive bloods/ or organ involvement. However, there are treatments for mouth ulcers, migraines and kidney issues readily available via other specialists. You can ask for differential diagnosis outside of rheumatology.
The positive protein should be looked into by your gp and if need be a urologist. Migraines can be referred to neurology for treatment and a dermatologist or dentist can offer specific treatment to help these.
I am sorry you did not receive answers from a rheumatologist but it does not mean you will not be able to find help in other departments. There are tons of differential diagnosis that cause all the symptoms you mention not just connective tissue disorders.
This sounds very discouraging. I think you need explanations for certain things. If the rheumatologist does, indeed, think you have UCTD, then why is he not treating symptoms?
What is causing the protein in the urine? I would think the protein would be a concern no matter what the diagnosis.
Did he recommended anything for the ulcers? Did you have them when you were examined?
As @Roarah says, there are other possibilities besides connective tissue disease. Unless the doctor doesn’t trust the lab you used, he wouldn’t ignore the positive tests if they were significant.
Really hope you get answers. Most people here are on hydroxychloroquine if diagnosed with UCTD or lupus. You need clarification on this.
Please know I’m thinking of you and sending love and positivity. I understand what you are going through. Hang in there. The lovely people in this forum helped pickle me up, not so long ago. Keep sharing with us.
Thank you everyone for all your helpful comments and support. So grateful for this community where we can vent and share advice and realise that we're not so alone as it often feels! Sorry for my late reply, I've had a couple of very long and busy shifts at work.
I absolutely don't care what my diagnosis is, and I'm not looking for a 'label' as often times people assume we are. But with a correct diagnosis comes correct treatment and that is my priority. I'd love to know that I'd be on a medication that would stop these flares from becoming more constant than they already feel. And to be honest I'm a little cautious about gabapentin as I have heard things about the side effects and I've researched in to that too. Plus, I'd have to have a word with my manager to get me off of night shifts I think regardless as it's also nights that completely knock me for 6.
I just feel that all my symptoms have been given the most easiest answer - fibro. When actually I don't meet the criteria for the widespread pain index or other symptoms in order to be diagnosed with that. And I feel that my other history as mentioned above, chest pain, ulcers, joint (not muscle) pain, blotchy red skin in the sun which makes me feel unwell... have just been swept under the carpet as it's more convenient to do that. The rheum also knows my family hx of my dad having psoriasis and arthritis, his mum having arthritis and her mum having arthritis too (all as younger people) so that is 3 definitive generations not including myself of issues like these.
Anyway, I digress. My plan going forward is I'm going to push to get the gabapentin (although still at loggerheads with my GP) and try it so that if it isn't helpful I then have grounds to push for further investigation. If necessary, I am willing to change GP surgeries. Rheum has put in his letter that if no improvement on gabapentin then he is happy for GP to use his letter as a referral to the Behcets centre at Royal London - so I feel that that is some progress at least. I know gabapentin takes a bit of time to work, so I am also willing to ring Lupus UK to discuss other local rheums. There is a cons with a good website who practices at the hospital where I work who I am also considering booking in with for a second opinion if no improvement in a couple of months time.
Again, thanks for telling me to keep fighting the good fight, so pleased to be on this forum and sorry for rambling but it certainly helps to get it all out!
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