Feels Like so Much Waiting and Worrying - LUPUS UK


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Feels Like so Much Waiting and Worrying


I'm really trying to go day to day with what's been happening to me. When this all started with stomach problems I didn't really expect to end up here. I keep worrying about things like scleroderma, even though I don't seem to have any of the symptoms of it. I've made a little progress on the gastro front, I've been able to have CT images which show my internal organs are fine, no evidence of much of anything. I would assume that's good news. I finally had my endoscopy and colonoscopy on Tuesday, and it turns out I have gastritis. That's probably been the source of most of my discomfort internally, but I'm just worried about how everything is connected. My blood tests have shown that there is probably some kind of autoimmune issue. Elevated ESR, neutrophils and monocytes. I'm seeing my gastroenterologist tomorrow, and this time, since it's going to be a really long wait to see a rheumatologist it seems, the next series of blood tests I'm going to ask to run will include an ANA test.

I've definitely been having a lot of anxiety. I worry about my skin, and my aching inflamed joints. I've not seen any evidence of tightening skin, or thickening. But it seems drier, and perhaps more wrinkled than it was, perhaps thinner. I don't really know. I've had slight rashes crop up, odd pink raised sore blotches on my chest. And my skin feels sensitive.

I seem to alternate between not being able to sleep and feeling very tired. This whole ordeal has been exhausting. I should note I don't live in the UK (I live in the US), but after finding this community, I just felt I had to get things out there, try to talk to people who have gone through similar things.

My eyes, mouth, and throat have been dry lately as well. I've been wondering if perhaps I have Sjögren's. It's been frightening for me to try and figure it all out, and I know the only way is through investigating it. But I do want to prevent things from getting worse. I wonder if there's something my doctor can do now, some kind of medicine I can take in the mean time which may help me. I don't want to get worse, or go many months or even years without answers getting worse all the while.

I don't know if there's relief at all when people find out what it is, when they start getting treated... if it improves. Currently that's my hope. I don't want to be 30, as I am now looking at the last years of my life. In some ways through this process, I've had some fears, at first thinking what if I had cancer and now I know that I don't. So I should feel better. I wondered about IBD, but it seems I don't have that either. I feel like it's a diagnostic maze, and even though each time so far I've come up with 'good' news, the way I feel currently isn't good.

I'm sorry for rambling, and I know I have to find the answers, and hopefully get the help I need from my doctors. I just, at this moment I felt I had to get it off my chest. Passing the time waiting is very slow.

9 Replies

Hi there. I am sorry you have felt unwell. I am also in the US and understand the frustrations of the "hurry up and wait." Life doesn't slow down because we don't feel well and somehow we have to manage our symptoms, go to work and keep up with everything, sometimes not understanding what is wrong to begin with. I am going through something very similar and each day it's something new. It is incredibly disruptive!

Not sure if this is much help, but if you can get an appointment with your PCP sooner than a rheumatologist, they should be able to run the ANA test. If it comes up positive, perhaps they can refer you to a rheumatologist (if you don't already have one) and then maybe they can get you in sooner to do more extensive blood tests. It might also be worth checking your vitamin D levels.

Did the GI identify the cause of your gastritis? Were you tested for a B12 deficiency or pernicious anemia? A deficiency of B12 can cause a wide array of symptoms, including fatigue, anxiety and digestive issues. If you are having any absorption problems or if there are underlying food sensitivities that you have not yet identified, it could also wreak havoc on your system, including your skin.

I hope these suggestions don't add to the worry you are feeling. Like I said, I am having similar experiences and ruling out nutritional deficiencies and food sensitivities can help narrow things down. It certainly did for me. For example, I had elevated ESR for years, then learned I was sensitive to dairy (cow's milk specifically). Now that I have eliminated it, my ESR is finally within normal range. If the underlying problem is a deficiency or a food sensitivity, you can implement supplementation or eliminating the problem food right away - and be on your way to feeling well sooner.

Best of luck at your appointment tomorrow and I hope you feel better very soon!

eirinym in reply to npc0823

Hey there, thanks for the reply. I'm sorry to hear you're going through similar problems. I don't wish any poor health on anybody, it's certainly putting me through a lurch.

I have had vitamin deficiencies in the past. I'm definitely on supplements right now, vitamin D and a B complex, multivitamin. I also got some magnesium. I'm not sure about all the levels but one test recently showed low calcium. The levels of electrolytes on my last test were pretty normal, but it didn't show B12 levels or vitamin D. Oddly, I had started calcium supplementation after that low result and it was almost high so I think I'll lay off that one.

I do think it would be good to get a more comprehensive test showing vitamin levels and it's something I will discuss tomorrow. I'm also pretty sure she'll be able to order an ANA test. I'm definitely requesting it. At the very least it'll be more information regardless of what it shows.

As far as food sensitivities go, I'm not sure. I've been of animal milk for years, but I do eat cheese. I'm being tested for Celiac, so I'll see what that turns up. But so far other than my stomach my digestive tract looks okay. I'm not sure what all symptoms gastritis can cause but I've had a hell of a time with stomach gas and burping. I hope healing my gastritis helps with that.

As always I've got a lot to think about, hopefully I can relax some and feel a bit better. Some days feel worse than others. As it is right now I'm feeling rather tired. Thanks for the reply, I'll keep trying my best. Hope you feel better too.

npc0823 in reply to eirinym

Thank you for the well wishes. Fortunately the communities and forums on this site can help us exchange information so we can all build some confidence when dealing with doctors and hopefully we will regain some control over our health.

How did your appointment go today?

eirinym in reply to npc0823

It went awfully. I tried to tell her how bad I was feeling and how I needed help. I told her about my rheumatologist appointment so far out and tried to ask her if she would give me anything at all that might help me, or if she could refer me to someone who could see me sooner, but she just rushed me out of there, said she can't help me. It's left me feeling completely depressed and anxious. I worry I'll just keep getting worse and that I'm not going to get any treatment. I look at my skin and see it looking so much worse than it did a few months ago. I have so much inflammation and joint pain, I can't sleep well at all.

I've managed to get an appointment with a specialist in things like autoimmune diseases for Tuesday. I don't know if they can help, but I am certainly feeling panicked about all this. I keep debating trying to get into a hospital.

It's all so frustrating everyone I see basically shrugs and says they don't know what's wrong. So much seems 'fine'. But I see and feel myself getting worse all the time.

npc0823 in reply to eirinym

Oh no! I am so sad to hear this - I’m sorry you had such a poor experience with the GI. Unfortunately, I have had this same experience with dismissive doctors rushing me out of the office or trying to pass me on to a different doctor. Sometimes you are lucky if you get 5 minutes with the doctor after waiting so long to see them.

I understand how aggravating it can be and how exhausting it gets between how you are feeling and taking time and energy to see all of these doctors. In the last three weeks I have had three consultations with two different doctors - neither of which helped me. Now I’m seeing a third doctor next week. I’m holding out hope that this doctor will help, bc what choice do I have?

I do worry a lot and get frustrated and cry about the situation, but it generally makes my symptoms worse. I am trying (key word here is “trying”) to remain optimistic that I will feel better soon. Your next appointment is a good next step and I hope they will be more helpful. You deserve answers and you need them now.

If you run into another dead end though, you might be able to find a functional medicine doctor in your area who can help. Generally, they can do more thorough analysis of blood work and urine tests to find out what is going on. They will also spend at least an hour with you during each appointment and will help you figure out how to treat you using diet, supplements, etc. Not sure what your feeling is on that, but it could be an option for you. The trick is finding one who accepts insurance or will give you the paperwork to get reimbursed bc they tend to be more expensive.

Here is a link to find one in your area: ifm.org/find-a-practitioner/

I am sorry I can’t be more helpful. I really hope you get some relief soon. I understand how hard it is but keep on fighting for your health and don’t let these dismissive doctors get you down.

eirinym in reply to npc0823

You absolutely don't have to worry about not being helpful. Being in a similar boat as me, we can only empathise about the same problems with doctors and the struggle to get well, or as well as can be. I ended up going to the ER yesterday morning, and it was terrible that I had to go there. But even though they couldn't diagnose me without admitting me to the hospital I got medication out of it. Methylprednisolone and clonazepam. He offered to give me tramadol for my pain but I told him I didn't really think I needed pain meds, just something to help the inflammation subside. The other one is for anxiety and to help me get some rest. It's still not as effective as I would like and as I've just started the steroids I'm not sure how bad I'm going to get with insomnia and restlessness but we'll see.

The doctor I'm seeing Tuesday has a long, in depth appointment approach. It's supposed to be at least 1.5 hours and they'll do comprehensive blood work, specifically for autoimmune markers, among other things like hormone levels. I have had issues with low testosterone levels after I was diagnosed with a condition called diabetes insipidous when I was 17. I used to take a drug called desmopressin every day for about 8 years to replace the vasopressin my body stopped producing but then I spontaneously started producing it again so I don't need to take that now, at least for now. It could come back.

I'm encouraged by the fact I have something which might help keep my inflammation down for the time being and that I'll be able to see someone while I work towards my eventual rheumatologist appointment. I'm also trying to get back to having a primary care physician. Problem is, I don't have insurance right now so this is all really a financial mess for me. But I need to get well. It's somewhat ironic that I basically am not able to work right now based on how I'm feeling. Once I am all the money will basically be going to medical bills to pay off what I owe. At least for a while. Thankfully I still have family to help me through this, I probably wouldn't be able to survive through this without them.

I hope you start getting some more luck, and as much as it doesn't sound like the most desirable option, if you feel you need help, if you need medicine to keep you going through this, I don't regret going to hospitals a couple of times in this. They really did help me, even if it's costly, I think my health is worth it. I'm sure yours is too. And if you've got insurance maybe they'll help some. For me to get insurance I have to wait till the open enrolment period which starts in November. Unfortunately the only other options are short term ones which don't cover preëxisitng conditions which means they would drop me like a hot potato once they notice I'm getting treatments and blood tests for chronic problems.

I feel much better today than the past two days so I hope that provides you some optimism. I think I'm on the right track now. Just gotta hope the rheumatologist and PCP I get coördinated with will be dedicated to working with me to get me well.

Best of luck to you. Let me know how you get on, I'll write about my appointment next week afterwards. I hope it turns out to be worthwhile.

npc0823 in reply to eirinym

I am glad the hospital was able to help and get you some relief. Sounds like your upcoming appointment will be very productive and helpful.

It becomes quite the juggling act when you are managing more than one chronic illness. I am glad you have family who are there for you during this stressful time.

So happy to hear you are feeling better today. Best of luck with your next appointment!

Hello eirinym,

It's really hard waiting for diagnosis, especially after lengthy waiting times and perhaps years of worry about one thing after another. Hopefully, you are closing in on some answers now. I'm a bit unsure about why an auto-immune causation is suggested - raised ESR, monocyte and neutrophil counts are all very non-specific markers. Usually they indicate an infection of some kind (although they can be elevated due to auto-immunity and other things too). Likewise, the commonest cause of gastritis is probably H pylori infection of the gut - but they must have tested for that before they did your CT scans and endoscopy?

In any case, your GP should be able to confirm this, plus the ANA test, as npc says.

Hope all goes well - and do let us know the outcome x

eirinym in reply to whisperit

I'm grateful for the response. H Pylori test was one of the first ones I had, and it was negative. It's true there's no confirmation about autoimmune yet, but I've had two doctors bring it up, and on my trip to the hospital they also suspected it.

I guess it's really like smoke signals, until I have the ANA test for starters. But then again I've read about people having false negatives and so on. That'd be frustrating. In the least I want answers, and some kind of help to get better. In the meantime, tomorrow I'll see if I can get that test done. And perhaps my gastroenterologist has a reference for another rheumatologist who I might be able to see sooner.

At the very least perhaps she can prescribe me some medication to help, if not only something for this anxiety.

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