Ongoing symptoms - systemic condition?

[ZM1980]

Hello all, I have various ongoing physical symptoms (started around 2006 - I am now 40), seem to flare up now and again, but are getting worse over time. These include: acid reflux/GERD, joint stiffness/mild joint pain, tinnitus, mild hearing loss, dry eyes, fatigue, weakness, brain fog and general digestive symptoms.

I have had various tests over the years, only abnormalities are slightly raised ESR levels, plus a diagnosis of Microvascular Angina and mild small airways disease (possibly reflux related). I do have some problems around menstruation (periods longer duration), but only since 2019. Blood test at 21 days showed slightly low progesterone and higher estrogen levels.

I have seen many doctors/different GPs and have done a lot of research into my symptoms, but can't seem to find any answers. I did consider Thyroid conditions, but all tests are within 'normal' range.

The past week has been particularly bad, as my reflux has worsened, I feel nauseous in the morning and during the day, very low energy levels, feeling hot, then cold and worsening shortness of breath when walking at a fast pace/incline - plus difficulty concentrating/brain fog. Temperature, BP and oxygen sats all in normal ranges.

Can anyone relate to these symptoms or any suggestions of what this could be? Could a long term hormone imbalance be a possibility?

Thanks

[b1b1b1]

Have you had an ANA (anti nuclear antibody) test looking for any type of auto immune illness?

[ZM1980 in reply to b1b1b1]

I had RF and ANA blood tests about 2 years ago, but both were negative. It does feel and a lot of the symptoms point to an autoimmune condition, though

[b1b1b1 in reply to ZM1980]

You might want to repeat these tests, as auto immune conditions can be very difficult to diagnose. Did you see a rheumatologist for these tests? If not, I would do that. I hesitate to mention it, but there is also chronic fatigue syndrome. Ask your rheumatologist about this. If you are in the US, many rheumatologists also serve as internists for patients with diverse troubling symptoms. Also, re auto immune issues, test for Sjogrens (not sure if I spelled it right) syndrome, as this causes dry eyes. It is very difficult to get a diagnosis when you suffer from diverse conditions. I sympathize with you as have been in the same place, but did finally recover. Also, see your cardiologist on an ongoing basis. xx

[ZM1980 in reply to b1b1b1]

Thanks 🙂 I will speak to my GP and ask for blood tests to be repeated. I saw a Rheumatologist over 5 years ago, but only had X-rays of upper back (as was having stiffness, slight pain etc) - the ANA and RF tests I had about 2 years ago. Unfortunately here in the UK, most doctors tend to only focus on/deal with one problem at a time, so I usually have to see them a few times before I make any progress! Although I have mentioned a few of my symptoms during one appointment previously. I did consider CFS and Sjogrens, as a lot of symptoms I have are consistent with those conditions. I'm glad you managed to get the help you need and recover. May I ask what condition you were diagnosed with? xx

[b1b1b1 in reply to ZM1980]

Yes, it was finally diagnosed as a reactivation of an old Epstein Barr virus. If I get any viral (not bacterial) illness, the symptoms return, but usually don't last too long - 1 to 3 weeks, and are relatively mild. When this first happened I felt terrible for about 15 months. It was also a period of high stress, other than the illness. This happened about 20 years ago. I saw many, many doctors and was given all sorts of diagnoses, some more terrifying than others. The last doctor I saw did finally diagnose the problem and I recovered over the next few months. He is still my doctor. I had all sorts of symptoms, but main ones were very red cheek bones, moderate constant fever, swollen red hands and feet, plus a lot of more minor symptoms. It took me about a further six months to regain my strength. I would just tell you not to give up on getting to the bottom of your problem. xx

[ZM1980 in reply to b1b1b1]

That must have been awful for you to have gone 15 months without knowing what it was - I'm glad you finally found a doctor who was willing to look further in order for you to get a diagnosis. I think I have a similar problem with flare-ups of symptoms when I'm under stress or if I have a viral illness - only rest seems to help with recovery. I spoke to a GP at my doctors surgery today and asked to repeat blood tests, so hopefully will be able to go from there. xx

[b1b1b1 in reply to ZM1980]

Ask for an Epstein Barr virus test. It is a simple blood test. Probably you don't have it, but just one more thing to cross off the list. Yes, I was terrified during the 15 months I was sick. My family kept telling me kt was all in my head, but I knew it wasn't. I hope you can get to the root of your issues, but I know it is difficult. The good thing is you have done a lot of research. If you can, try to reduce stress as much as possible, although I know this is very hard. PM me any time. xx

[ZM1980 in reply to b1b1b1]

Thank you ☺️ My GP messed things up with the blood test, as I checked my records and he had discussed things with a senior GP, who advised that no blood tests currently needed! I was annoyed about this, as I explained all my symptoms in great detail and asked for tests in writing and verbally. I'll have to speak to another GP again soon. In the meantime, will try Lansoprazole and inhaler for the Asthma/breathing issues - although I know they haven't helped much in the past.I can relate to the assumptions from others that symptoms are all in your head - it's the worst feeling when you know something is wrong, but others doubt your judgement. You're right, stress definitely exacerbates symptoms! xx

[Klutzy]

Have you looked into Chronic Lyme?

All the symptoms you listed are with Chronic Lyme. I don’t know about the UK, but it’s quite prevalent here in the US. You need to get specific tests for it. While tinnitus isn’t listed on first link, many Chronic Lymers have it with hearing loss.

lymedisease.org/lyme-basics...

lymediseaseassociation.org/...

I know how infuriating it is when doctors don’t do proper tests and just dismiss your symptoms. So many patients have to do their own research. Hang in there and keep trying to get the help you need.

[ZM1980 in reply to Klutzy]

Hi KlutzyThanks for the links about Lyme Disease, I have looked this up before, but haven't had any specific tests. Some parts of the UK it's more prevalent, like the countryside/rural areas - although I think it's more widespread now, with incidents of tick bites in local parks in suburban areas around London. GPs here would never consider it, unless you have a rash/proof that you were bitten by a tick!

Have you had any tests for Lyme/chronic Lyme?

It is frustrating to have so many different ongoing symptoms and to not have a diagnosis, but you're right, we just have to keep doing our own research and persist until we get somewhere ☺️

[Klutzy in reply to ZM1980]

You’re welcome! In doing my own research, I found out mosquitoes can also carry Lyme. I had found a tick on years ago, but never had bulleyes rash, fever or any of the earlier symptoms. And most of my symptoms were going on longer than the tick bite.

It took my friend 20 years to find out she had Chronic Lyme. Drs diagnosed her with every disease but that. She went to a specialist as Lyme because more well-known. I called one years ago bu he wanted $1,000 USD for the test.

I thought of getting tested now for it again. However on recent blood tests, I had ESR and CRP in high range and from what I can tell they wouldn’t be w/ Chronic Lyme. And my recent symptoms, I get red knuckles, red elbows and now a red ear to go w my joint pain and stiffness I had, along with Ataxia symptoms and neuropathy. I can’t find the redness on those body parts w/ Lyme.

[ZM1980 in reply to Klutzy]

I wasn't aware that mosquitoes can carry Lyme disease - another thing to watch out for!! Would you say you had any additional symptoms after the tick bite?

Wow 20 years is a long time - I bet your friend was relieved in a way, to finally get a diagnosis. I'm guessing treatment would involve anti-inflammatories, painkillers, depending on the symptoms.

My ESR levels are usually in the higher range, CRP was a bit high in last blood test - want to get these repeated, though. How long have you had your symptoms for? Have you been tested for Lupus or other autoimmune conditions?

[Klutzy]

My balance issues (minor then) and numbing started in my late 20s, I was always stumbling. Now in my early 50s, symptoms progressed and I have to stand w/legs farther apart to maintain balance. Most of my symptoms were before tick bite. Ataxia isn’t common w/Lyme, and Lyme arthritis doesn’t affect small joints, like the hands, and is not symmetrical as mine is.

I’m trying to get tested for autoimmune, but can’t find a rheumy where I don’t have to wait months. I also need MRI of head so not sure which to do first.

And my friend w/Lyme has a completely different progression and different symptoms from me. She already had the issues when I met her at 20, and she had joint pain early on. I had none. Chronic Lyme doesn’t go away, even aft treatment but her hip and other things aren’t as bad now.