Please help, I dont know what to do

sadiehamley

New member
Joined
May 4, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
11/2019
Country
UK
Hello,
I am new to this forum. I am Sadie, a 20 year old female living in Kent, UK. I have been dignosed with fibromyalgia and poly cystic ovaries.
I have a lot going on right now with my health and personal life. the doctors have no clue whats wrong with my health and are completly useless.
So i have pretty much every symptom of fibro, the chronic pain, the chronic and worsening fatigue and brain fog, itchy rashy skin, pain when people touch me sometimes, depression etc
But I also have a lot of stomach problems. Im going to go into depth so this is your warning if you dont like gross detail keep scrolling.
Up until 2020 I had a healthy stomach and gut with little to no issues. But at the start of 2020 I started bleeding from my back passage. This wasnt just blood mixed in with motions or hemmarhoid bleeding. I was unable to pass any motions but would let out flatulence and so much blood that would spray around the toilet bowl and fill up the toilet. This happened a few times a day. My doctor didnt take my symptoms seriously or urgently. Half way into 2020 I was still having these symptoms and finally had results showing inflammation from a stool sample. So i was refferred for a colonscopy
At the beginning of 2021 I was still waiting to have that colonscopy, I didnt pass as much blood but my constipation symptoms started to get alot worse.
I was woken up with severe abdo pain in the middle of the night in Febuary this year which landed me in A&E. A few tests were done and I was told it was constipation. I went back to the hospitals a few days later for a scan which showed inflammation of my bowels again.
I was reffered to have an MRI. I had my colonscopy and an MRI in March this year. Nothing came up on the colonscopy and no results came back from the MRI which means they didnt find anything wrong.
All this time, from late January this year till now whilst waiting for scans, bloods, appointments and everything else I have suffered terribly with my symptoms. Ive had severe constipation, severe abdo pain especially after eating and after passing a bowel motion,severe bloating, severe acid reflux I have constant acid taste in my mouth and really bad nausea, I have little to no appetite and Ive lost alot of weight. When my symptoms were at their worst I was unable to eat much, food just made me feel so unwell and made me flare up in pain at which time I lost a stone in under two weeks. For your information Im a tiny petite girl whos 5’2 and was already under 9 stone so that lose of weight was huge. And i am struggling to put that weight back on.
Ive had another ultrasound since which was all good, no problems the doctors could see. I dont know if Im still inflamed a little with my bowels but I dont think I am anymore.
I was vegan but have added alot into my diet which has helped with the constipation. But this nausea is awful, I cant eat cause Im in pain, I cant sleep cause I feel sick, I have episodes of feeling overly hot but cold, palpitations, stomach pain and nausea so severe I have my head in the toilet.
My bloods are usually good although I believe I am lacking b12 again because I believe I dont absorb some vitamins well.
I have also had severe itchy skin lately mostly on my feet and legs, so severe i now have cuts and scars all over. I dont know if this is related or not
And lately Ive been thinking. For years now I have had vaginal and pelvic pain, pain with intercourse, pain in my vagina when i go to sit up I ws going to ask to be referred to a gynecologist for those symptoms but I am thinking that these vagina pains may be linked to fibro too
But back to my main concern; my stomach and gut problems. They are a complete mystery and are being overlooked greatly by my doctors. When trying to talk to a doctor I am usually quickly dismissed and are bashed for being vegan. And I will be honest with you my depression is awful because of this, I am so miserable and am starting to give up. When awake at night my problems feel so heavy and make me feel quite suicidal.
So I ask you my fellow warriors; what do you suggest I do?
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I have also had a lot of stomach and gut problems. My first suggestion is that you explore food insensitivities and intolerances. Gluten, lactose, caffeine, FODMAPS, any others you can think of or can find by researching.

The way to do it is remove absolutely ALL of one thing from your diet for at least a month. This means reading all labels because gluten, (found in wheat of any kind, rye, and barley) for instance, can be in so many things you would not even think it is in. There are many names for wheat. There is Triticale, which isn't different, it is just wheat and rye mixed together. And so on. the same is true for lactose and other things you may have an intolerance to.

Only do one at a time, and as I say give it at least a month of very scrupulous and rigorous removal to see if it makes any difference. If you notice even a slight improvement, give it another month. And so on.

Often we have to take our health into our own hands and do the experimenting on our own instead of depending on the doctors to find out what it is.
I would also suggest seeing a natural health doctor or practitioner of some kind to see if they have any recommendations. In the US they are called naturopaths, don't know about the UK. It was a natural health practitioner who suggested I remove gluten from my diet, and when I did some serious problems I had had all my life with my digestion cleared up by about 80%.

There are many things you might be food sensitive to. I don't mean allergy...it's not the same, and not something a test will tell you. The only way to find out is to remove it and see if you feel better.
I hope this helps!
 

Rhyl

Active member
Joined
Aug 15, 2020
Messages
43
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
KY
I have also had a lot of stomach and gut problems. My first suggestion is that you explore food insensitivities and intolerances. Gluten, lactose, caffeine, FODMAPS, any others you can think of or can find by researching.
Completely agree with this. I had pain, bloating, and gas, and found out I was sensitive to gluten. You can get blood tests that will show this, as well as allergies/sensitivities to other foods.

I'm not sure about the bleeding, though. An MRI or US should have showed any issues - I would likely have my scans re-read by another party to make sure they didn't miss something (I worked for an imaging company, and the doctors miss things all the time).
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I wdnt listen to the vegan-bashing... :) Could you have a hyperacid stomach? And IBSC? There's good info around about what to avoid. Personally an elimination diet of single foods has worked better for me than avoiding/reducing 'gluten' or reducing carbs, nightshades etc, but I'd still try them first, because that might be quicker, cuz you have whole classes of foods. I need a Mediterranean diet for cardiovascular reasons, but that seems to be one of the healthiest for others too, and is compatible with a vegan diet (nuts and soy instead of fat fish etc.).
And have you tried psyllium for the constipation?
 

Patrick

New member
Joined
Jun 26, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
08/2018
Country
UK
1. Change your doctor.
2. Try a low fodmap diet.
Just google " is x low fodmap" you will be surprised what you can eat.
Steer clear of the baddies, like wheat, onions, garlic and use lactose free milk.
You should feel benefit in a week.
If you are bleeding still it needs further investigation.
You are probably getting many symptoms due to liss of blood.
Are you taking codeine for pain.?
This causes constipation in many and that leads to other things.
Try switching to ibuprofen for a fortnight but read up on correct limits.
Good luck.
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
133
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
It takes time to find what foods help. I went to alternative doctors that put me on the right path. They gave me a list of safe foods and a list of bad. After a couple of weeks they have you try a food like chick peas. If you don't have reaction you can add to your diet. After about 7 months I had a pretty good idea of what foods worked for me. Now I'm replacing any chemicals I use in cleaning. Not many if any medical doctors are schooled in food so they can't help. Find an alternative doctor and find supplements to help you. Don't get on the pill diet where one pill helps but need another and another and have to deal with alot of side effects.
Medical doctors are great if you need surgery or have an injury but useless for
chronic illnesses.
(((gentle hugs)))
 

chillax316

Member
Joined
May 7, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
Hi sadiehamley,
I was diagnosed with leaky gut in January by a holistic doctor. Then I saw a segment on CBN with Dr Colbert talking about Leaky gut. He wrote a book called Healthy Gut Zone which I promptly ordered and read twice in a week. He says that 90% of all illness begins in the gut. I would recommend you read that book to understand all the things that trigger bad gut health and how to reverse it.

Probiotics are super important to restoring gut health. I take supplements and drink kombucha (it's an acquired taste). Your gut has good bacteria and bad bacteria and basically you want the good bacteria to outnumber the bad. Probiotics increase the good bacteria.

I am on a super restricted anti-inflammation diet (no bread, rice, pasta, dairy, sugar, processed foods, etc) and it is helping correct my gastro issues. The proteins allowed are eggs, turkey (breast or ground), tuna and salmon.

Maybe it might help you to take magnesium...try to start taking it at night. I like the Country Life magnesium caps. I had to experiment a bit with the different types at first.
Wishing you health and happiness.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I was about to say magnesium too - it might help with your digestion, depression, and sleep. I just ordered magnesium glycinate for similar motivations, after doing some deep-dive Googling. For depression, it's a little controversial, but having had a horrible reaction to almost every antidepressant under the sun, I'm now finding some relief with low-dose lithium orotate - if exploring this, perhaps chat with one of your doctors, as they will want to check drug interactions and keep an eye.

I'm so sorry you've had so much to deal with, Sadie. I wish there were more ways to help! It sounds like there's some really good advice above about thoroughly exploring food sensitivities and ditching that doctor - I'm sorry, I'm catching up having not been on here in a while - but please do come back and update us on how you're doing.
 

Rhyl

Active member
Joined
Aug 15, 2020
Messages
43
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
KY
And have you tried psyllium for the constipation?
And some of the best foods for constipation are plants. Tea does it for me. Add pretzels and I go from constipation to diarrhea!
 

DebMarPir

Active member
Joined
Jul 10, 2021
Messages
38
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
PA
Have you seen a GI specialist? If this is your abdomen and you have pain/nausea, etc. this would normally fall under GI. Also, with blood you may have also need a stool test (where they test 3 stools to look for blood). The doctors may be thinking hemorrhoids but you should rule out blood in stool, I would think, and also check for ulcers, etc. I am not an expert, obviously, and am only recently diagnosed. However, I have had numerous issues pop up over the years and treated them all as I went along. One still would treat the conditions and not just ignore or write off and says it's fibro. Yes, it may be worsened by fibro but fibro doesn't cause bleeding. A Gi doctor may have done your colonoscopy, but also not. Somone mentioned food allergies. I have read a high percentage of fibro patients have this, so ask the GI specialist if you need to be tested and provide the datea. He/She will suggest allergy testing, no doubt. Good luck.
 

DebMarPir

Active member
Joined
Jul 10, 2021
Messages
38
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
PA
Wow, lots of information above. For Sadie, I don't know your meds (and you don't need to share) but if any are new and you started having symptoms, the itching of lower extremeties can indiate allergy to it. Part of the issue is that you need to be treating the individual symptoms. So if you have constipation, you should be taking daily fiber or else add in a stool softener. Nausea can be alleviated by Zofran and other meds, speak to your doctor about that. Fibro folks often feel temperetures differently, feeling overly hot or cold. Assume the hemmorhoid has shrunk and is no longer bleeding, but otherwise should next ge dealt with surgically. And you should be working with your OBGYN on the reproductive organ issues. Then you will know which part of the pain is really fibro. We still need to treat all the symptoms. I have many other issues, believe me! Good luck.
 
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