LUPUS UK

Rheumy saw 3 heads

Hello friends! I need some input. I have more recently been feeling a flare with lots of fatigue, heavy legs and just an overall lack of bounce. I have no energy to do anything, but can put on a happy face and fake it to the world. I currently have the diagnosis of UCTD because nothing points to anything specific. I saw my Rheumy last Wednesday and explained that I know I am having a flare when my arms/hands and sometimes my legs go tingly at night. I also get achy around my ribs, painful feet and have random joint pain (plus the extreme fatigue). I said that I thought the inflammation was causing swelling that is affecting and pinching my nerves in my arms and legs, especially at night. She looked at me like I had 3 heads and said that it doesn't make sense anatomically for that to happen. She wrote an order for physical therapy, saying that it could be in my neck and exercises might help. Am I all wet? My theory makes sense to me, but I guess it doesn't in the doctor world. Does anyone else get this symptom? I am not against the physical therapy. I just need to know if I am crazy or not.

All the best to you, my friends!

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I totally get your symptoms and your reasoning - and also the consultant’s 3 headed look! I have Sjögren’s and it comes to me with all you describe. X

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This crappy feeling is difficult enough without having doctor's act so blooming befuddled. I have a close friend that says the same as you, Twitchy. If this is so common among us, why do our rheumatologists think we are whacky??

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Hi Shareasmile

As well as all the symptoms you describe, I too suffer from Three Head Syndrome. It seems all too common. Consultants I’ve seen all say my symptoms aren’t possible as a package and look at me like I’m daft.

They do say ‘two heads are better than one’ so let’s hope three heads are even better.

I feel one of my harrumphs coming on.

HARRUMPH!

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I am bewildered that rheumatologists are not more familiar with the variety of symptoms and experiences that can present. Shouldn't they know this?? Having an autoimmune disease should be a requirement for all of them, so they can relate better. I have had to fight way too hard to be taken seriously. HARRUMPH!! =)

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I’m guessing it’s because they really don’t know that much about our diseases apart from what their medical training teaches them. This idea of learning from our lived experience is one important aspect to my chosen topic of doctoral research actually - if I get the funding that is! X

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I certainly hope you are successful at getting funding! Your personal experiences give you so much to build upon in your research!

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Thanks Shareasmile. I have learned so much from all of you on Healthunlocked over the years. I’m determined to do it for all of us. X

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Dear Twitchytoes, I just have to say that when I read your words IM DETERMINED TO DO IT FOR ALL OF US, I got misty eyed. I want to thank you for all your hard work, and your determination, for your dedication, for all of us, thank you, blessings, Littlebowpeep

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Aww thank-you. Over the years I’ve developed such a burning desire to stand up (what a laugh when I suffer from orthostatic tremors so can only sit or keep moving lol!) to disbelievers - usually neurologists in my case.

I’m a woman with a mission, having always been told that my own autoimmunity was a feature of anxiety from a young age. It’s only retrospectively that I realise that my late mum projected her own feelings of guilt and anxiety onto me!

So I’m actually quite a robust and sanguine person and just won’t put up with doctors who barely know me saying that my desire to support invisible diseases with visible signs is “heightened health awareness”. This was said in the full knowledge that I have established/ recognised autoimmune diseases and despite knowing that I have been treated with various strong immunesuppresants over the years. So I can only imagine how those who are still undiagnosed are treated?!

So a large portion of what motivates me is simply the desire to set the record straight with more unpleasant, unprofessional doctors - for me and for many others who have been belittled simply for knowing that things weren’t right in their bodies! X

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Your a strong woman, who's hardships have made her even stronger. Its sad that we have to fight so hard to be heard, let alone be believed. I am sorry to hear your have so much going on with you health wize, keep up the hard work(as I know you will) many prayers for you personally, and for the noble work you are carrying out, blessings, Littlebowpeep

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I'm sure many of us applaud you as well as identify with you.

I'm not fully diagnosed after many years of just getting on with it until to the point exhaustion and illness took over. Drs and physio have said that just can't physically happen. A neurologist even said migraines have nothing to do with EDS as EDS affects the joints ONLY.

So I thank you and as well as everyone else who shares!

Be Well 🌻🌼🌞

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Ironically I’m just starting an EDS/ MCAD journey after years of confirmed autoimmune diseases so we can inspire each other onwards. 🤷🏼‍♀️🤗

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I'm going the other way EDS, now researching Lupus and Sjögrens. Seeing two different Rheumatologists. Always hopeful.

Feel free to pick my brain about EDS

🌼🌻🌞

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Thanks . My main question is whether it’s worth asking about when I have so much else I need to discuss when I see my rheum - for first time in a year.

I’m aware that lots gets blamed on hypermobility once it’s been acknowledged and I don’t want to give my doctors any excuse to dismiss me!

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So, who are the autoimmune experts medically speaking?

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I think that each of us are the experts in the impact of autoimmunity on our own bodies

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You deffo are... your own and ours. Twitch, I send you much love and appreciation, thanking you for your diligence, insight and compassion. X

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🤗😎🤗

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Hello! Anatomically speaking, nerve impingement originates at the coordinating vertebrae and the nerve problems are felt at the afflicted area. Systemic inflammation is a separate problem. Cervical vertebrae 6 and 7 (or C6, C7) are where the nerves that relate to your arms, hands, and fingers branch off of the spinal cord. Lumbar vertebrae 4 and 5 are responsible for parts of the legs. Nerve impingement can occur from wear and tear over time due to living and lifestyle, or can be caused by injuries. They can also be caused by posture problems or if carrying excessive body weight. Have you ever sustained a neck or back strain, neck or back injury, or been in an accident? What sports and activities have you been involved in throughout your life? Certain activities typically correlate with spinal wear and tear in specific areas.

I had times where I couldn't feel my left hand. Also lots of numbness in my left arm. Then there were all the spasmed muscles across my shoulders, back, and neck. Long story short, it was mainly caused by a misaligned vertebrae in my neck from an accident. Vertebrae are all connected like a chain. If one on top is malaligned, there's a very good chance that those below will also not be aligned properly. I also had some thoracic vertebrae that gave me problems. As a result, I had horrible rib pain on my left side, basically from bra strap on over to my latisumus dorsi and into my shoulder, then down my arm. It took cervical spine xrays to diagnosed it. Once I got that fixed, I don't have any of those problems any more, after many years of suffering. Thank goodness! A few months ago I followed up with an MRI and found some bone spurs on those vertebrae that relate to my left arm. Because my neck is fixed, I'm not having those nerve problems.

Are you taking magnesium malate for your nerve pains? Many people with nerve pain are low in magnesium. Magnesium malate is great for nerve pain, as is plain magnesium. I wouldn't recommend cheap old magnesium oxide so much because it is something like only 30% absorbable. Low potassium is another that cause contribute to nerve pain.

If it was me, I wouldn't do PT without demanding some diagnostics first. I will never do that again! I was originally sent to PT after my accident. HUGE mistake! The doctor didn't read the MRI I had at the time correctly, misdiagnosed me and sent me to PT for something completely wrong. This caused me excruciating pain, and horrible spasms. I fired the doctor and tried for years to find the source of the pain. Three years and many doctors later, I met a great doctor who suggested a cervical spine xray, including the base of the skull. It was that xray that finally got the diagnosis correct and lead me to the right treatment to resolve the pain.

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I've been in a similar situation to you...nerve tests, i.e. NCS/EMG are also helpful. My EMG was positive for chronic cervical radiculopathy, NCS was negative & they sometimes don't bother with the EMG.

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Hi ShootingStars! Thank you for your reply. I know that problems with the spine can cause nerve issues. I'm not denying that. However, for me, the fatigue and overall unwell feeling, combined with the nerve problems at night point to a flare. I've had pinched nerves before that were caused by an injury of some kind. This did not originate in the neck or spine, but still affected the nerve and caused pain. It seems like inflammation/swelling could "pinch" nerves also, but not according to my doctor. Sometimes, I just feel like an idiot after my appointments because I share too much, I guess. I do take magnesium, but will have to check which one. Thanks again for your reply.

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Laying down at night is the trigger? If this is happening only at night, it might be because laying down puts different pressure on nerves than while standing up. Mine was also worse at night. My hand would go numb at night and the pain would wake me up sometimes. I’d also get throbbing in my back or neck somewhere that I could feel and I swear hear in my ears.

If systemic inflammation was so high it caused nerve impingement, you’d probably have very high blood pressure too and possibly have serum leaking from skin due to the pressure. Do you have either of those symptoms?

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No, I do not. But it seems to happen when I have other symptoms of a flare and goes away with steroids. It is just a theory of mine because of the correlation with other symptoms.

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It is SO interesting that you have pointed out so astutely that things got worse at night, once you've gone to bed, or/and while you are asleep. How true that is. I often wonder if the hormones might be a factor in this (?).

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I've gone into the odd ramble myself when these idiots don't listen. It is them - not you. I don't know what the state of medical education for Rheumatologist are there, but here they learn absolutely nothing about it at University.

They really have no business being our specialists.

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I get exactly this, with pins and needles and numbness (lasting longer than if you’d just temporarily trapped a nerve by body position) in hands, arms and legs. I had exactly the same theory as you that it was inflammation in the nervous system from a lupus flare. When I said that theory to the neurologists, like your experience, they said it was too much of the body affected and must be migraine, fuctional or fibromyalgia rather than lupus inflammation. They knew so little about the basics of lupus though that I was cynical! I have now seen other experts who have explained that it is inflammation in the nervous system. Mine calms down hugely with steroids.

I think that this feeling is the start of a flare for me too but I’m a little cautious in using it as a flare marker and then starting steroids as I also do get migraines with neurological auras which give quite similar symptoms. So yesterday I had a horrible migraine that caused a lot of pins and needles, temporary paralysis and numbness. I had the migraine headache but sometimes you can get migraines with neurological symptoms without the headache and migraine is a part of lupus too. I think I’m working out the difference for me between just migraine and a neuro lupus attack is that the lupus attack usually comes with extreme fatigue, joint pain and other neuro symptoms too (and lasts much longer). The actual numbness/ tingling though is very hard to separate between migraine and a lupus attack for me.

I think they look at us like we’ve got several heads because overall systemic nerve inflammation doesn’t fit the usual picture they see in the majority of people who have lesions or damage to one nerve from entrapment/ damage so they can see a clear pattern of sensory/ motor loss in them but not us. In us it effects so much more of the nervous system because it’s generalised inflammation of the nerves?! That’s my theory anyway - not sure the medical profession agrees!

I spent months with various neurologists/ neuroimmunologists/ rheumatologists and no one really got to the bottom of the pins and needles. I was diagnosed with neurolupus but that was on the basis of all the other neuro problems rather than the neuropathy but I, like you, really think this is the start of a flare for me.

I think the only thing we can do is observe it carefully in ourselves and know we haven’t got 2 heads - the medical profession just haven’t always caught up with what we understand from our bodies!

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Thanks so much, Melba, for sharing your experience. Steroids have helped me very much in the past, but like you, I don't want to lean on them too much. My doctor offered to prescribe them but as I already have some osteopenia, I said no. I fortunately do not suffer from migraines at all, so I am thankful for that. All the best to you!

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I often wonder why Rheumatology is unwilling to learn CNS lupus. In the US, there's a lot more campaigning on raising awareness on a number of "elusive" aspects, including offering trials. I'm sure it happens here but in a far more low-key level. Anything which appears to be "complicated" seems explained away as "brain fog" or what have you if you know what I mean? So if you have CNS lupus/nerve involvement, you are essentially a well-forgotten entity and you are doing all the work for yourself whilst doctors think your sanity might be off.

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As I look at it, it's easier if we know the medical lingo/basics for these nerve issues. I doubt this is a patient's fault (as we know) and lupus is a very weird illness most of the time. I do feel that there must be swelling and that will affect the nerves, which are also inflamed. They are not gonna show up on tests/conduction test/MRI etc. So now you are branded as "someone, who makes so much fuss over nothing." It's another excuse, really. Drs feel inadequate in front of informed patients who sound as if she knew better than them and she/he would resent it and try to rip your credibility apart to finish you or simply say to themselves internally, "this one has no clue on basic anatomy, sorry for her, really, cough cough..". Not good ones, of course, but I have some experiences in the past when I was very ill. They are self-absorbed in their doctor's life and lifestyle. Patients are people that they have to "deal with" to keep their lifestyle going. Not good ones, of course, and they get punished by doing more for the patients to make them get better. NHS want more and more, patients to get "sorted out" with less money, less time/quick turnover, fewer costs/ fewer tests (maybe, none), etc.

The Drs do have a tendency to talk down to patients as if they are a Judge. They can humiliate those who are "lower" than them. Maybe, some element of superiority when they see a patient. I'm dressed smartly when you (patients) are not. I'm eaning this much and you are not. Almost like a class issue, hierarchy. There are good ones and NHS hate them. Also, there's a geographical lottery factor. If you live near the well-equipped hospitals (read, specialist centres), you would have much better luck. They have a better chance of receiving the good patient care. I'm going through a complaint but began to think it wasn't even worth it.

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My rheumatologist is always very kind and listens well. And I would rather that she tells me what she is thinking than just put it in her notes that she thinks I'm loony. I'm just learning that there are many things with UCTD that I will need to sort out myself. It shouldn't be this way. But, for now, that might be the best option unless something obviously clinical pops up that will visually prove what I say. These diseases, however, are often elusive to everyone on the outside of them. I wish all doctors could experience these things themselves to help them understand.

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I cannot agree more, sharesmile. I'm so pleased with reading the thread. Similar stuff. Yes, I know. They are busy, already thinking about how many to go on that day before her dinner/lunch etc. Are you sure you do not have SLE?

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So far, my bloodwork only shows a positive ANA. My doctor tells me that it leans toward lupus, but nothing is definitive yet.

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I had and still have all the symptoms your describing with a few more thrown in, has anyone suggested you could have MS? I was treated like I was wasting docs time, I was lying, I was anorexic, carpal tunnel ( for which I had an unneeded op) I was suffering from deep dark depression ( I prob was by this time) I put up with all the rubbish doctors threw at me just to get me out there surgery for over 3yrs until a loccam doc sent me for a brain scan and lumber puncture, it turned out I had 7 lesions on my brain and 3 on my spine which is what MS does to our brains and attacks the nerves so we have weird sensations which are hard to describe, only problem now is every time I’m ill it gets put down to MS.

I hope this helps and hope you get to the root of it soon.

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Good suggestion. I, too, had enough symptoms that the neuro needed rule out MS with scans. It was negative. After suffering for a few more years with no diagnosis, I couldn’t help but wonde what horrible disease was causing my symptoms. Then it was finally found, as noted in my first post above.

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So is your SLE diagnosis replaced by MS, if you don't mind me asking this? Have you seen MPTSD by a well-known forum poster? If you haven't, it's worth reading.

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UCTD is my current diagnosis with leanings toward lupus. I will check out MPTSD. Thanks!

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I will take a look, I’m now suffering symptoms which has no connections with MS, these include water retention, kidney pain, falling to sleep whilst eating dinner ( I often wake with mint sauce or gravy all over my face) and different pains which is nothing like the pain with MS. I’ve been tested for under active thyroid which came back negative, now my doctor is not interested as it now means he can’t just throw tablets at me he actually has to investigate which he’s not interested in. Tbh I’m at a bit of a loss of what to try next.

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Hi Lisafaye! That thought has occurred to me also. I have a first cousin with MS. But I don't have many of the symptoms that are common to MS. It isn't off my radar though! Thanks so much for sharing your experience!

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