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Always unwell doctors don’t know what’s wrong!

Posted , 6 users are following.

Charchar90
Charchar90

Bit of a long one and I don’t even know if I’m in the right place ...

I have been going back and forth to doctors and hospital for 3 years! I’ve had bowel problems and joint problems and I am 90% of the time unwell I get a lot of fevers and high temperatures as well as high blood pressure when I’m not feeling great.

I was told I had ibs as suffered with bad bowel movemts and sent on fodmap to help control my diet I also had colonoscopy and ultrasound, they finally found out that I have Bile malorbsorption.

I also have numerous joint pains in my knees arms thighs lower back, and these are really painful somedays, I have been complaining of a dull ache in my lower back and sides for some time and was getting cramps in my lower left side every time I went for a wee, I went to the doctors who done a urine sample which showed blood so they gave me anti biotics, these did not help and I went back a week later with complaints of a fever and still pain I done another urine sample which again showed blood, they then put me on another course of antibiotics 

3 weeks went by and I started to feel the pain again then it turned into a full blown fever where I was shaking and sweating out at night I went back to the doctors who suspected I might have first stages of appendicitis and referred me to a&e where I had bloods taken, which came back normal and done an ultrasound which theu couldn’t find anything! I’m currently waiting for a rheumatologist appointment and have been on the waiting list for 30 weeks 

I feel like I’m going mad and no one knows what is wrong with me, they have found every time I’ve had a blood test at the doctors that my ferritin has always come out high and was even double the normal rate at one point but have no idea where it is coming from as my liver results where normal

I also was on the contraceptive pill but was suffering with migraines and they have now put me on the mirena coil. 

I need help as I feel I am running around in circles.

0 likes, 6 replies

6 Replies

  • judy1947
    judy1947 Charchar90

    Posted

    I have an autoimmune disorder. When I had a pneumonia shot the doctor said that it didn’t work, so now I get gamaglobulin shots once a month. I have COPD so getting pneumonia would not be a good thing.  I also have fibromyalgia which I just read could be related to my autoimmune system deficiency. Throughout my life I have gotten really bad colds, with a cough that sounded like a seal, at least twice a year. After I was put on an inhaler those days seem to be over. So, all I know to tell you is to look into the shots and see if they help. Also, probiotics might help and drinking plenty of water.  My parents told me that before antibiotics doctors would tell you to drink a mason jar full of water every half hour which I find interesting   I wish you improved health 
    • BCThealth
      BCThealth judy1947

      Posted

      Hi Judy, I also replied to charchar90 and I think u could benefit from the same product. If you'd like to learn more let me know and I'll shoot u through some info 👌

  • BCThealth
    BCThealth Charchar90

    Posted

    Hi charchar90, your symptoms sound a lot like my father in law. I'll cut straight to the chase. His doctor recommended a new product, it's a cell signalling supplement. In a nutshell it's helps your cells communicate better and boosts your immune system. He's doing much better since he started taking it 3 months ago. His in a has settled right down, his body pains he says have almost gone and his blood sugar (type 2 diabetes) is more manageable.

    If you're interested let me know I can be more specific (public forum). Hope this helps.

  • lisalisatheone
    lisalisatheone Charchar90

    Posted

    High ferritin can be linked to elevated inflammation.  I have an autoimmune condition and from one patient to another I would bet money you do too.  Do not give up on getting a diagnosis.  It took me four years and I still think doctors sometimes guess at what to do or say.  It’s a tricky diagnosis so be prepared to spend some time dealing with all this.  Best advice I can give you ——1)  keep a journal of symptoms and ALL records of blood tests, outcomes, scans, etc.   it will help you explain symptoms to your doctor you may even forget you had.
    • Charchar90
      Charchar90 lisalisatheone

      Posted

      Thanks for the reply, they have said they suspect I may have fibromyalgia, but then there saying I wouldn’t have high ferritin levels or blood in my urine, I also had slightly raised white blood cell count! I went back today to see the doctors to try and push for my rheumatology appointment! He said he will try but he’s not hopeful! I don’t feel like my doctors are trying to help me in anyway and in fact there bored of my pestering!! Im 28 years old and can’t keep feeling ill and run down all the time 
  • jen6dawters
    jen6dawters Charchar90

    Posted

    Many of your symptoms can be traced to the gut so the diet is extremely important for controlling your pain and tiredness. For me Xifaxan for the gut worked wonders. Has any of your doctors tested you for SIBO?  They can do a simple stool test over 3 days. Xifaxan is not a cure but I can hold a job and my weight is normal. The problem with Xifaxan is the cost. I needed 4 two week prescriptions to show improvement. My insurance has covered it for 12 months. My GI told me that's very rare. It won't be generic for at least 2 years. Once I got it free from an RX coupon company online. Once the bacteria is under control the inflammation is lessened. The natural options might work. For me I broke out all over my body. I can't take pro or prebiotics without itching. With Xifaxan many other chronic health issues disappeared. My diet is extremely limited still but I'm adding a few foods to see. It hasn't stopped my arthritis but it's better. 

    Every person's body is unique so what works for me might not work for another. 

    Ive been told that heredity or susceptibility is an issue. My husband has no gut issues on his side of the family. We can eat the same food (twice we did) and I'll spend the night dying in the bathroom and he sleeps through without an issue. Once my sister was with us and she and I slept in the bathroom. This is to say you might pick up bacteria like my husband and not even know it. But later your inflamed gut starts causing problems.

    I always thought I had the flu since 1990's. 2001 I was stool tested and came back positive. My GI sent me to blow in plastic bags every 15 minutes for a few hours to check methane and hydrogen levels too. High methane are usually constipated but not always.

    I also got migraines and that when my veins would snap right before my eyes. Like a worm crawling under my skin. Big bruises. Removing most fiber helped. 

    It takes awhile but don't get discouraged. Doctors know so much more now. They admit it's people like us that grow their knowledge. 

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