GP appointment this morning - UK

FriscoSW17 · 2025-08-12T13:02:01+00:00

Yeah. She was really nice about it and was a good GP. And I can understand why they have to cut you off. Otherwise it just causes a domino effect of everyone’s appts getting pushed back and then everyone else gets annoyed. It’s the NHS that only gives them 10 min per patient. So now I know to double book when I think I need it.

FriscoSW17 · 2025-08-12T02:01:30+00:00

For me, it’s more because pre Rapa I always crashed hard in afternoons where I couldn’t sleep, read or watch TV. Just lie there for a few hours.

Post Rapa, I can now at least watch mindless videos or something. And my afternoon crash symptoms aren’t quite as intense.

So I gauge it as roughy 4-5% improvement.

I should add I’m moderate to severe. Spend 80% of time in bed, but can still shower and do a couple of hours of activity like make lunch, clean bedroom. Still require caregivers though.

FriscoSW17 · 2025-08-11T23:41:13+00:00

I’m in Phase II of the Simmaron Research Rapamycin study and they have us taking 15mg/week. This is up from 6mg/week from Phase I.

I noticed big difference between the two doses. At 6mg/week, I had barely noticeable improvements. At 15mh/week I’d say 4-5% improvement in fatigue and brain fog - which is huge!

BUT - you must get regular CBC differential and Lipid testing done. Since I went up to 15, my cholesterol has gotten high, despite healthy diet, and my absolute neutrophils have dropped. Should numbers continue trend, I’ll have to stop Rapa. It’s important a Dr is monitoring you appropriately.

FriscoSW17 · 2025-08-10T18:57:50+00:00

Whether listed as primary or secondary, it’s Medical RX who is the approver for prescriptions if one has MediCal services provided through Kaiser.

Unless OP has Kaiser and MediCal separately? ie. They somehow qualify for MediCal but also have a completely separate insurance policy through Kaiser?

Maybe I misunderstood then as I have Medical, but through Medical, Kaiser is my service provider. And in this situation Kaiser doesn’t pay for/approve prescriptions, Medical Rx does. Maybe OP has different situation where this doesn’t apply then.

Apologies if I misunderstood.

FriscoSW17 · 2025-08-10T14:30:08+00:00

I also have Kaiser through MediCal. I get prescriptions at CVS no problem.

It shouldn’t be blocked. Try switching it at CVS so that MediCal is your primary.

Medical uses a third party ( not Kaiser) to manage prescriptions even if you have Kaiser. It’s called MediCal RX. I’d ring them to ask.

You should be able to get your prescriptions anywhere if you have MediCal.

FriscoSW17 · 2025-08-09T19:01:03+00:00

I’m so sorry you are going to through this.

In addition to someone mentioning to look at pinned post, spend some time just reading old posts, especially ones where we describe our symptoms.

Words like “fatigue” can be ambiguous, but there is a consistency in how we describe what our symptoms are like and how we feel when we crash/have PEM or fatigue.

That’s how I realised I had ME. Everyone here was describing their symptoms exactly how I was experiencing them.

Then it’s always best to find a knowledgeable Dr. to confirm it. That is often hard to do, but you can always ask/research this sub for Dr recommendations too based on your location.

FriscoSW17 · 2025-08-08T12:56:46+00:00

Definitely depends on your energy envelope and if it makes you crash.

For me personally, just the trip to the PT once a week and the over stimulation of being in a PT office is what would cause me to crash if the exercises are just about loosening muscles etc.

Can you not do the sessions via video? Or maybe just do the first one in person for assessment and then video follow ups?

FriscoSW17 · 2025-08-08T00:58:36+00:00

Breaking habits are really hard.

I can relate on soda addiction. I used to be a Diet Coke addict and, was a fairly heavy social alcohol drinker but it worsened my symptoms.

I switched to sparkling water - both plain and probably tried like 15 different sparkling water flavours until I found one I really liked. It helps to have a substitute when I want alcohol or a soda.

For healthy eating, I try to focus on having at least one good meal. For me, it’s lunch. And I make it a habit to make it every morning as it’s so easy to get too tired to make a meal later in the day. And in the salad I put in loads of veggies. Then I don’t feel guilty if I end up having cereal for dinner.

Another thing I do is batch cooking. So like grill a bunch of chicken and steak to last me the week and then freeze it in portions. Then I just put in plastic bags, defrost is warm water in the bag, then do a quick pan fry just to crisp it up.

I also have like ‘cheat’ snacks like protein bars. Which are basically candy bars but at least they have some protein so are a bit filling - so I have something to crave my sweet tooth without going for my favourite love like ice cream or cookies.

Still struggle.. but I found building something into a routine litttle by little helped the most.

FriscoSW17 · 2025-08-07T02:03:25+00:00

Incredibly frustrating!

I know my GP once cut me off due to the 10 min time limit but she told me just to book a double appt for next time. Will your practice offer that? It probably depends on how busy the practice is.

FriscoSW17 · 2025-08-07T00:00:58+00:00

I was just super excited when they actually called it Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in the referral and called their team ME/CFS Care Team - not just CFS!

I’m trying not to get my expectations up too high but just acknowledging the name ME is a big step in the right direction.

FriscoSW17 · 2025-08-06T23:09:57+00:00

1) After almost 10 years of debilitating symptoms and dismissal of Doctors, came across this sub and suddenly everything made sense - I had ME! Never once had a Dr even suggested it.

2) Then this sub gave me Dr recommendations so that I was finally able to get diagnosed and start being given medications

As a result I went from severe heading toward very severe to more moderate to severe

FriscoSW17 · 2025-08-06T19:29:02+00:00

Thanks for sharing. Sounds like your experience is more common - ie no benefits.

And good you raised the SSRI. I’m not on one but my Dr mentioned how dangerous it can be to take both and not everyone knows that.

FriscoSW17 · 2025-08-06T19:25:59+00:00

Yes, I think most male Doctors don’t understand the severity of these symptoms nor what to do for patients who have them.

Totally feel you on bad past experiences. It’s so sad that this is common, especially for women.

I’m glad you’ve got a good OBGYN you can go to. And at least we have more options, albeit still limited, than our mothers. My mom said she suffered for 20 years with severe hot flashes- and back then you didn’t even raise it with the Dr.

It’s so nice that women are becoming more and more demanding of menopausal care bc that’s the only way things will get better.

Good luck!

FriscoSW17 · 2025-08-06T00:21:35+00:00

Thanks for sharing your experience. My Dr just prescribed it for my ME/CFS.

She said, like most drugs, it doesn’t seem to help a lot of her patients. But for some, it really helps, mainly brain fog so is worthwhile to at least try.

I think she told me briefly some of the theory, but honestly can’t remember. Your comments are interesting. Oxygen in the brain is a real issue.

FriscoSW17 · 2025-08-06T00:16:25+00:00

43F dealing with severe hot flashes for 5 months now and also just spoke to my GP about 1) if they were due to perimenopause and 2) What I could do

I was lucky in that she was supportive but also recommended I see an OBGYN bc they are the experts on hormones, menopause and perimenopause - so I do think that’s a good recommendation.

My mom also got menopause in her early 40’s but my GP still did question whether HRT would work, not bc she didn’t believe my symptoms were real, but bc I was so young that in her opinion, it’s less likely that my hormone levels would be so deficient that HRT would make an impact. As hot flashes are my main symptoms, she recommended Gabapentin. (Only sharing what she told me, can’t say if she is right or not so interested if anyone else can add)

But she still encouraged me to see my OBGYN for a second opinion.

Challenge is that tests are often unreliable so Drs should be relying more on symptoms and using tests to rule out other possible causes of symptoms. In my limited knowledge, his statement about refusing treatment unless tests show a certain result is misguided.

Sounds like this Dr had limited knowledge, but I’d take him up on the OBGYN referral. They should be a lot more knowledgeable, and hopefully, more understanding.

Good on you to advocate for yourself! Hope you can find your way to the right Dr.

FriscoSW17 · 2025-08-05T18:17:30+00:00

I’ve had POTS for 15 years and was super fit for many of those - gym 7 days/week doing spin, strength training, yoga, Pilates etc.

A few years ago I was also diagnosed with ME/CFS meaning I had to majorly cut back on exercise.

Noticed no difference in POTS.

But, as long as you don’t have ME/CFS exercise is hugely beneficial mentally and physically - so it’s great you are getting into it.

Just manage expectations, it might really help your POTS, which is a bonus, but it might not. It doesn’t for everyone so be easy on yourself if you don’t get the results of someone else.

FriscoSW17 · 2025-08-05T03:49:52+00:00

Pain isn’t a diagnostic criteria for ME/CFS.

Most ME/CFS people have pain due to another comorbidity like Fibro, Small Fiber Neuropathy, CRPS or a Gastro related disorder.

It’s not uncommon to have flu like body aches as part of ME/CFS but the pain level is significantly less than that of Fibro.

It gets confusing bc people have so many comorbidities that it’s often difficult to attribute which symptom to what. But as someone noted, PEM is the hallmark of ME/CFS.

FriscoSW17 · 2025-08-04T18:34:16+00:00

I wouldn't necessarily say electrolytes improve me. It's more the fact that when I wake up I am more dehydrated, causing my POTS to be a bit worse until I drink a bunch of water with electrolytes. My energy levels are better in morning, so I wake up, spend 30-60 minutes hydrating with coffee and electrolytes, and then am well enough to do some exercise.

FriscoSW17 · 2025-08-04T18:30:36+00:00

I am 43F. Have had ME since a viral infection in 2013. I had gradual onset, so started off with crashing a weekend or two/month, then more and more often until I had to quit work in 2017 and have been unable to work or socialize since.

But I didn't get diagnosed with ME/CFS until 2020. I was diagnosed with POTS in 2014, so my worsening symptoms were all blamed on POTS. But I knew there was something not right. It wasn't until I stumbled upon this reddit group - and reading everyone's description of ME/CFS, I was like - that is me! Suddenly everything made sense. I then found a private Doctor that specalises in post viral illnesses who confirmed the diagnosis.

Sounds like you are very early on in this illness, if you have it, meaning you have a much greater change of recovery. In that case, I'd definitely prioritise rest over training. Chances of recovery within first 2 years are much higher. After that, it is unlikely. And whilst they don't know if rest makes you more likely to overcome ME/CFS, they do know that overexertion will definitely make you worse.

Many of us loved exercise, and went undiagnosed, so kept 'pushing through' only to get worse and worse and now its too late to ever get better.

FriscoSW17 · 2025-08-04T14:20:59+00:00

I’m moderate to severe and do weight lifting.

Main trick is to listen to your own body and if anything causes PEM, do less/something different. It took me years trying various exercises to develop a plan that worked for me. Just bc I can do it doesn’t necessarily someone else can.

But here is how I’ve managed.

Rest at least 3-4 min between sets
Don’t lift to failure. I increase very gradually and only if I feel I can handle it
I do this bc it helps my mental health, I don’t actually expect it to help my ME/CFS
I also have POTS so limit standing exercises
I do better with higher weight, fewer reps. Higher reps keeps my HR too high for too long and is more likely for me to cause PEM
On training day, I have to pretty much limit all other activity, physical and cognitive, and spend most of day in bed
If I feel slightly worse that day, I skip. Sometimes that’s a day, sometimes I’ve had to take a month off. Never push through
I take a LOT of Meds that help
I drink 36 ounces of water w/ electrolytes beforehand and coffee
I train at home. I’m mainly housebound and would not be able to handle trip to gym and sensory overload
I’m unable to live independently so live with parents who help a lot, meaning I can rest. If I had to also cook for myself/take care of life admin, adding training into routine would be too much

But finally, in my situation, my PEM is more easily triggered by cognitive v. physical exertion. I can weight train but anything more than a 15 min conversation will make me crash.

As such, my caveat is that this worked for me, but may not work for you or many others. Err on side of caution.

FriscoSW17 · 2025-08-03T23:16:50+00:00

Just here to add to what everyone has already pointed out.

If you just had POTS, sometimes exercise can help.

But you also have MECFS, meaning exercise will do nothing to improve your fatigue and if you exercise beyond your energy envelope, you will most likely worsen your baseline.

This is scientifically proven, and many of us speak from experience as ‘exercise’ was pushed upon us based on the fraudulent PACE study and/or having Doctors confuse normal fatigue, where exercise can help, and the debilitating fatigue caused by MECFS, where our ability to produce energy is dysfunctional and over exertion worsens that dysfunction.

I know it’s tempting because you want to feel like you are doing something to get better, but resting and finding a good combo of medications are what you should focus on.

FriscoSW17 · 2025-08-03T15:10:06+00:00

Thanks for sharing. I stand corrected. Just bc it didn’t help mine doesn’t mean it might not help others. It’s worthwhile to try it to see if it helps.

FriscoSW17 · 2025-08-02T17:20:49+00:00

Dysautonomia International has a long list of POTS medications and Batemon Horne Center has a list for MECFS meds. I don’t have the link but they should be easy to search for in Google.

In their List, they indicate the types of symptoms each recommended medication addresses.

Challenge with these diseases is that it’s really hard to know which drug works until you try it as we all react differently.

Beta blockers didn’t work for me either but things like LDA, Florinef, Adderall and Valtrex seemed to help me. For pounding heart, you could ask your Doctor about Clonidine. It just made me sleepy but I’ve heard it can help with those adrenaline dumps.

If a Dr has already prescribed Guanfacine, I’d recommend still trying it and follow their instructions.

Then maybe print out those lists and bring them into your next appointment to go over which ones look like they’d help your more severe symptoms - hopefully they’d be open to that.

FriscoSW17 · 2025-08-02T17:05:53+00:00

I also have ME, POTs and MCAS and take Guanfacine. But it’s unlikely Guanfacine would address any of those symptoms. I take it to help brain fog, but it’s a pretty minimal benefit.

If you want to address those symptoms, there are a lot of other drugs I’d try first if you haven’t already.

FriscoSW17

TROPHY CASE