SandCastle: missed the tapering boat

[SandCastle]

I just wanted to add here that I had a pelvic exam yesterday and the doctor did not find anything immediately wrong. She did schedule an ultrasound for Tuesday just to be sure there are no masses or uterine fibroids. I’ve regular had a cramping feeling like the kind you get right before your period for at least the last month and I’ve had it off and on for a few months before that.

[HealthHopeHappiness]

7 hours ago, SandCastle said:

I just wanted to add here that I had a pelvic exam yesterday and the doctor did not find anything immediately wrong. She did schedule an ultrasound for Tuesday just to be sure there are no masses or uterine fibroids. I’ve regular had a cramping feeling like the kind you get right before your period for at least the last month and I’ve had it off and on for a few months before that.

Hi @SandCastleI’m glad the doctor did not find anything worrying and hopefully the ultrasound brings you more reassurance. Did you have the covid vaccine? I only ask because my cycles were really affected by it, in fact I have a gynae appointment next week for similar symptoms to you. A woman I work with also had bother with her cycles after the vaccine - cramping, pain, irregular bleeding, etc. Just a thought. 
 

How have your other WD symptoms been recently? 💞

[SandCastle]

Hi @HealthHopeHappiness yes, I did get the vaccine and I actually had the booster in November, about 5 days before my first late period, so for a while I thought that might be it. I didn’t have any problems with my first round of vaccines, but the booster was made by a different company. The doctor even said it might be what’s causing my problems, but I had lost some hope after things seemed to really improve over the course of two months until I was on vacation a few weeks ago and the cramping got so bad that I just wanted to sit on the couch for two of the days. I’m still hoping that it was either the vaccine or withdrawal. I’m sorry to hear you’re going through similar issues!

[SandCastle]

I just wanted to put the results of my ultrasound here. It turns out I have PCOS, which probably doesn’t have anything to do with withdrawal, but the doctor also said it probably isn’t what’s causing the cramping feeling. They did not find anything on my uterus, so I’m thinking the cramping/pain between periods is from withdrawal. However the PCOS is probably causing the irregular periods. I’m not thrilled I have PCOS, but I’m definitely happy it wasn’t something worse.

[HealthHopeHappiness]

30 minutes ago, SandCastle said:

I just wanted to put the results of my ultrasound here. It turns out I have PCOS, which probably doesn’t have anything to do with withdrawal, but the doctor also said it probably isn’t what’s causing the cramping feeling. They did not find anything on my uterus, so I’m thinking the cramping/pain between periods is from withdrawal. However the PCOS is probably causing the irregular periods. I’m not thrilled I have PCOS, but I’m definitely happy it wasn’t something worse.

Sorry you have PCOS @SandCastle although I’m glad it’s nothing more worrying.
 

I was at the gynae last week and had womb biopsies taken and am awaiting an ultrasound for constant pain. I am convinced (and actually hoping) I have fibroids as I have continual pelvic pain and swelling. Strange how we both have gynae issues… I definitely put some of it down to WD. I have estrogen dominance which can be caused by excess cortisol, and fibroids are related to too much estrogen. So if it does turn out to be that, I think it’s been related to the stress of WD causing higher cortisol levels and a hormone imbalance. I wouldn’t rule out WD having some sort of impact on your PCOS, although I don’t have any evidence to back that up, it’s just that nothing surprises me! 💞

[SandCastle]

@HealthHopeHappiness Before the ultrasound when I was just discussing what was going on, my doctor did mention that fibroids were a possibility. That must be common for the symptoms. I didn’t even think about the excess cortisol, so that is a good point. When I have time later, I might search the site for PCOS and see if anyone else developed it after AD’s. If nothing else, maybe this will be the push I need to cut back on sugary foods since PCOS can lead to insulin resistance. And then MAYBE cutting back on sugar will help ease withdrawal symptoms?? I’m sorry you are now in the waiting game. Waiting is the hardest part, I think. I hope everything goes well with the biopsy and that you get your ultrasound soon!

[arbor]

Dear @SandCastle

I'm truly sorry to hear that you are experiencing pain and now find you have PCOS as well.  While I was on Sertraline, I developed cysts on my ovaries.  The doctors rushed me to the hospital and took everything out.  They were benign.  I believe now that the oophorectomy hampers my recovery.  No one in my family has had PCOS.  I can't prove it, but I believe my situation was a result of the drug.  I certainly can't advise, but I do advocate caution regarding the status quo medical world's approaches.  Have you tried fish oil or magnesium?  I'm speculating that they might help with cramps.

I hope this is not an intrusion, but helpful.

Sending you best wishes 💜

Arbor

[SandCastle]

@arbor I would have been terrified if I was in your position! I can’t believe the doctors didn’t investigate more first. It is helpful to hear this and thank you for sharing. I was hoping to get more magnesium from food, and for a while I was doing really well, but not so much lately. I did make the decision to start fish oil and need to just settle on a brand and buy it already.

[ChessieCat]

12 hours ago, SandCastle said:

If nothing else, maybe this will be the push I need to cut back on sugary foods since PCOS can lead to insulin resistance. And then MAYBE cutting back on sugar will help ease withdrawal symptoms??

 

It's not just sugar but also carbs (processed foods, bread/wheat, pasta, rice, potatoes/sweet potatoes).  Carbs turn into glucose.

 

When people go on a low carb diet, doctors might advise them to use contraceptive measures because they can end up falling pregnant when they haven't managed to before.

 

Ep:06 PCOS, Low Testosterone and Gestational Diabetes

 

Diet helps PCOS!

 

Dr. Tim O’Dowd - ‘PCOS and Insulin Resistance: A lifetime of opportunities'

 

PCOS | Improvements since going Keto / Low Carb & Losing weight | KtO_ Keto

 

[SandCastle]

Things have been bad today. I woke up with twitching and buzzing all over and symptoms of Tardive Dyskinesia in my upper lip and one thumb. My thumb was practically uncontrollably this morning and would just type any letter it wanted on my keyboard and phone. That has improved over the last few hours. My lip is still pulling upwards, and I’ve felt some pulling in my cheek too. The interesting thing is that the last time we had a really bad storm, the same thing was happening hours before. Today is exceptionally humid and we’re supposed to have storms this afternoon. I wonder if humidity or something with the weather has this much of an effect on symptoms acting up.

[HealthHopeHappiness]

On 6/13/2022 at 5:17 PM, SandCastle said:

Things have been bad today. I woke up with twitching and buzzing all over and symptoms of Tardive Dyskinesia in my upper lip and one thumb. My thumb was practically uncontrollably this morning and would just type any letter it wanted on my keyboard and phone. That has improved over the last few hours. My lip is still pulling upwards, and I’ve felt some pulling in my cheek too. The interesting thing is that the last time we had a really bad storm, the same thing was happening hours before. Today is exceptionally humid and we’re supposed to have storms this afternoon. I wonder if humidity or something with the weather has this much of an effect on symptoms acting up.

Hey @SandCastleso sorry to hear you have a return of some of the TD symptoms. They are so unnerving but hopefully since you’ve had them before and they’ve settled, the symptoms will leave as quickly as they’ve returned. Interesting about the humidity. Mine always flare up with hayfever. So odd isn’t it. Keeping you in my thoughts and hoping this passes quickly. 💞

[SandCastle]

Thanks @HealthHopeHappiness luckily it was pretty short lived. Things started getting better yesterday, and it’s still really humid, so maybe that had nothing to do with it!

[arbor]

Glad you're feeling better @SandCastle

Thinking of you,

Arbor

[SandCastle]

Thanks @arbor. Summer seems to be my problem season while things tend to get better in the winter. I can’t believe I’ve been going through this for over two years now and can pinpoint seasonal ups and downs  ☹️. I haven’t lost hope in a full recovery, but I no longer think, “Maybe within the next few months!” I do think this week has been an improvement since only about two out of the last five or six days have been rough, so I can hold onto that!

[HealthHopeHappiness]

Hey @SandCastlehow are you doing? Been thinking about you. 💞

[SandCastle]

Hi @HealthHopeHappiness I had a lengthy window about two weeks ago that maybe lasted a week. It was great. It was the longest break I’ve had in a long time with almost no symptoms. But this past week everything fell apart again. I’m starting to pull out of it, I think. Yesterday was really great with no muscle cramping, no slurring of speech, no swallowing difficulty, no akathisia, much less (if any) twitching. Today I’ve had a mild return of all that, but nothing to the degree it was last week. I’ve started really trying to lose weight recently, so maybe that started it. Nothing drastic, I didn’t give up any type of food or go on some special diet, I’m just calorie counting and exercising (mostly walking and swimming). It’s hard to predict what’s going to set off my symptoms.

[arbor]

@SandCastle--2 weeks!  That sounds so positive.  Truly, healing must be happening throughout the waves and windows.

Thinking of you,

Arbor

[SandCastle]

@arbor I keep trying to look at it that way. Some people say they go through their worst wave right before healing, so that’s in the back of my mind.

[HealthHopeHappiness]

5 hours ago, SandCastle said:

Hi @HealthHopeHappiness I had a lengthy window about two weeks ago that maybe lasted a week. It was great. It was the longest break I’ve had in a long time with almost no symptoms. But this past week everything fell apart again. I’m starting to pull out of it, I think. Yesterday was really great with no muscle cramping, no slurring of speech, no swallowing difficulty, no akathisia, much less (if any) twitching. Today I’ve had a mild return of all that, but nothing to the degree it was last week. I’ve started really trying to lose weight recently, so maybe that started it. Nothing drastic, I didn’t give up any type of food or go on some special diet, I’m just calorie counting and exercising (mostly walking and swimming). It’s hard to predict what’s going to set off my symptoms.

I am so hopeful that your week of relief was a sign of the healing that has taken place, but I’m so sorry it was followed by an intense wave - I hope you are over the worst of that. I think the fact you are trying to improve your health through exercise and healthy eating is really positive too. I don’t know about you but during the deepest and darkest parts of WD I wouldn’t have had the capacity to think about doing anything like that. That maybe shows improvement too? Keep going, my wish for you is that your windows become longer and more frequent. 💞

[SandCastle]

@HealthHopeHappiness this is true, for a long time I would tell myself I needed to improve my health but never really did it thanks to the pain and other physical issues. It’s definitely a good sign that I’m willing to start exercising and am actually sticking to it.

[HealthHopeHappiness]

How is the swimming and walking going @SandCastle? How have things been for you these last couple of weeks? 💞

[SandCastle]

Hi @HealthHopeHappiness I got through a really bad wave last week, ending with Friday where I had that electric current of twitching throughout my body all day long. Things started to calm down a lot over the weekend. I’m now just dealing with an on/off headache. I’m questioning whether chlorine had anything to do with having a bad wave last week since I haven’t gone swimming at all this week and things have gotten better. I hate having to question every single thing I change and whether or not it has to do with withdrawal symptoms. I’m still walking regularly and eating a little healthier and am down about nine pounds, so that’s good news for me! I gained at least 30 while on Sertraline and another 20 while dealing with quitting CT. I think being active and in better shape will at least help me deal with all this and will hopefully improve my symptoms in the long run. I will say that even though my symptoms were way more dramatic in July than they’ve been the rest of the year - to the point that I sounded like I was drunk for several days because my speech was so badly slurred - I still have had more symptoms-free days lately than I’ve had in a long time. This is keeping me hanging in there! Thanks for checking in 💕

[peaceandlove]

On 1/28/2022 at 7:06 PM, SandCastle said:

Hi @HealthHopeHappiness I meant to respond earlier but I didn’t want to keep sounding like a broken record. I’m still going through a wave that seems to be getting worse. Over the last few days the twitching has returned, not as bad as before, but on top of that my lips and one of my thumbs are moving on their own. It seems to be under control now but it will just start out of nowhere. My memory has been terrible lately, to the point of not being able to remember the last names of some of the people I work with regularly. I’m still having digestive issues that are pretty strong, but thankfully the heartburn/AR is still gone most of the time. The urinary symptoms seem to have completely resolved too, which is great. Unfortunately the cramps in my legs, feet and arms have returned full force and are relentless. I’m also getting hit pretty hard with jaw pain, a pain in the side of my head, and my usual back and hip pain. I’ve been accepting of some symptoms and nervous about others. I’m hoping for a break soon but not sure what I can do to help that along. Thank you for reaching out 💕

hey 🙂 I just started having heartburn too out of no where. I was wondering how long this lasted for you?? 

[SandCastle]

Hi @peaceandlove I’ve had a few stretches of heartburn off and on since all this started for me, but I think the longest I’ve ever had it without a break was somewhere between 4 to 8 weeks. Now if I get it, it only lasts a few days and is usually set off by a virus or medication, and it’s a lot weaker. It was very strong early on.

[peaceandlove]

On 8/13/2022 at 10:49 AM, SandCastle said:

Hi @peaceandlove I’ve had a few stretches of heartburn off and on since all this started for me, but I think the longest I’ve ever had it without a break was somewhere between 4 to 8 weeks. Now if I get it, it only lasts a few days and is usually set off by a virus or medication, and it’s a lot weaker. It was very strong early on.

Ok thank you. Did you take ppis at all for it or just let it pass by itself?

[arbor]

Hi @SandCastle  I send you best wishes and hopes that you're doing ok with recovery.

Arbor💜

[SandCastle]

Hi @arbor I’ve been doing ok. I had a really great stretch over the fall, free of most symptoms. Not doing as well this month since some muscular issues have returned- twitching, cramping, spasms - plus arrhythmia and moving pain. I think it has something to do with my diet since I really cleaned up my diet the last 5 or 6 months of 2022. I don’t have the motivation recently and have been eating more takeout and processed food. I’m trying to meal plan again and get back to healthier eating, so hopefully I’ll have a better update soon.

[SandCastle]

On 12/9/2022 at 4:51 PM, peaceandlove said:

Ok thank you. Did you take ppis at all for it or just let it pass by itself?

Hi @peaceandlove sorry, I didn’t see this comment in here before. I haven’t taken any PPIs, just tums. They work pretty well for me in the moment, and I’m kind of afraid of PPIs. 

[HealthHopeHappiness]

Hi @SandCastlesorry it has taken me until now to check in on you. Just wondered how things have been for you recently? 💞

[SandCastle]

Hi @HealthHopeHappiness I am doing well the majority of the time! I could sum it up by saying compared to a year ago, I have probably 50% of the symptoms I had and I experience them maybe 30% as often as I did then. I’m coming up on three years in May, and the last seven months have been the first time I could really say I believe I’m on the road to recovery. When a wave hits, it does hit pretty strong still, but it’s much less frequent. It’s giving me hope for sure!

[arbor]

Wonderful news @SandCastle  Thank you for sharing!!!!

♥️Arbor

[Phoenixmama]

💞💞💞💞💞

[HealthHopeHappiness]

I am so pleased to read this. Wishing you more and more healing in the weeks and months to come. 💞

[Giuly88]

Hi Sandcastle,

 

Hope you are well. 
 

I can see you are recovering beautifully,

 

I am 10 months off lexapro and struggling with muscle issues.

 

Did you also experience muscle tightness on back, abdomen, ribs, gluteus and neck?

 

Thank you 🙏 

 

❤️