so many symptoms, so much frustration!!!

[aitch_bee]

hey everyone,
was just hoping that anyone might have experienced something similar, or at least just let me rant for a minute

first off, I've been experiencing problems with my menstrual cycle- only one very light period in five months- coincides with the 5 months I've been with my partner, BUT all pregnancy tests come back negative. Which is fine, no period is irritating but I can live with that!

But I've been experiencing severe cramping in the last few weeks like I'm about to get my period. My acid reflux/GERD is SO BAD right now, I'm on lanzoprazole but while that usually works fine for me, it just isn't doing the trick. even drinking water makes me nauseous.

I've also been getting a lot of cluster headaches which is a new symptom, I usually just get migraines that come on slowly and steadily- these cluster headaches are like nothing I've ever experienced.

And this week I've had a number of quite severe allergic reactions, which I've never really had before- hives, itching eyes, and finding it very hard to breathe. I should have gone to the hospital, but hey I didn't.

I saved that for a few days after (last night), when I was so nauseous and dizzy, like in a different way than I usually experience. I'm used to acid reflux, cramps, headaches, nausea, dizziness- but this was all happening in a way I've never experienced before.

Putting that together with everything else that's been happening and I feel like I was right to be concerned? Anyway I rang the non emergency line in the uk (111) and they sent me to the out of hours GP at the hospital.
They didn't really have anything to say to me, and put it all down to M.E. symptoms, medication side effects, and stress. Said I had high temp, low blood pressure, but hey that's nothing new either.

I'm on amitriptyline, lanzoprazole, and paroxetine- all that I've introduced very slowly and carefully, and they've all caused me little disruption (in the grand scheme of medication side effects)

Am I being ridiculous??? I think we can all understand that when you have a chronic illness, you know your own body. My body can handle a LOT of pain and discomfort, so when I'm complaining and going to sit for an hour in a hospital waiting room with the room spinning, you know I'm in pain and something isn't right!!!

Everything has just come to a head, and I just feel so frustrated, like back before my diagnosis. I thought I had a good handle on things (or was doing the best I can) but I hate not knowing what's going on with my body, and feeling like I'm over-reacting. Something just isn't right

 

[barbc56]

So, so sorry you are going through this. How frustrating for you. Did they recommend a follow up with your primary care doctor? The fact you are running a temp let alone your other symptoms says something. Emergency Rooms, at least in the states are unfortunately focused on stabilizing a patient and either hospitalize or recommend a follow up with your PCP or a specialist. While this can be immensely helpful in certain situations it doesn't necessarily give one peace of mind. But, in my opinion if sounds like you need a complete medical workup. It seems it would be advisable to see your see your doctor ASAP.

I wouldn't even want to speculate what's going on with your health but maybe others who have had the same symptoms can chime in. Just keep in mind that each person's experience may or may not apply to your situation.

You are absolutely not being ridiculous or overreacting because you are not feeling well. Don' beat yourself up because you feel this way. Sometimes even "doing our best", whatever that means" with this damn illness, doesn't mean things will improve because it's not always in our control.

I think you are right, something just isn'the right. Trust your instincts.

Keep us posted and best to you.

Barb

 

[barbc56]

@aitch_bee

I just noticed you have have just joined Phoenix Rising. There's a lot of helpful information and support here.

Welcome!!!

Barb

 

[aitch_bee]

thank you so much barb!! this was immensely comforting, I really appreciate it.

I've got an appointment with my usual GP on the 8th, so I'll see what he says. It's extremely hard (at least in the UK) to get things moving, like with things that I think might be helpful like scans, bloodwork etc. I know that waiting lists are long and these things take time- not helpful when you're having to live daily with the symptoms though.

Feeling in control is such a huge obstacle with this illness, because often it's futile. You can be doing everything "right" and things like this can still knock you down.

I'm going to just try my best to rest up in the next few days (even more so than usual) and wait it out until I can go and see my usual physician.

Best Wishes,
Helena

 

[barbc56]

I know that in many ways, I am lucky to be here for my medical care. Not that it's perfect by any means.

Looks like you have a plan in place to hold you over but I would not hesitate to go to the ER if needed.

Let your partner take up the slack for now as well as giving you lots of TLC. Hopefully, this is already happening.

Barb

 

[Valentijn]

I can have my period missing for a while too, or at least delayed. Reducing inflammation by avoiding foods which I react to helps a lot, as does taking a multi-B vitamin complex.

Since it does sound like you have a lot inflammatory issues going on with the food reactions, high EPA/HDH omega 3 fish oil might help with the headaches. I'm not sure if my headache is the same as yours, but without 3 grams of fish oil per day, I have a constant pressure headache.

 

[Tammy]

The nature of this beast is so unpredictable with so many variables. There have been many times when I have experienced some pretty bad unexpected symptoms out of the blue............that left me with the all too familiar situation of having to decide ..............do I go to the ER? Should I make an apt with my Dr? Is this just part of the illness? Should I wait it out? @ aitch-bee...........you are not over-reacting nor being ridiculous.......like you said.....you know your body best. It's always good to side with caution and get yourself checked out with your physician which is exactly what you are doing.............and your decision to rest up more than usual is a really good idea.

 

[aitch_bee]

@Valentijn
thanks for your response this is really helpful
It's not any particular foods that are causing me any issue, at least not to my knowledge. As a result I haven't been able to take my fish oils, as I've just been bringing them back up. But the headaches have started before that, so who knows! hopefully my doctor can advise with diet and more vitamins (so right now i'm usually just on krill fish oils and evening primrose)

@Tammy
Thank you! You're totally right, it's so difficult- and when I'm in the ER, they don't necessarily know about M.E, and the health professionals I do usually see might put it all down to M.E- which it all could be! It's all so confusing! Really nice to chat with people who can relate though, so I very much appreciate your input

(sorry if anyone is offended by the language- but gordon ramsay can express my frustration )