M.E, CFS, Fibromyalgia or something else?

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Hi all, 

27 y/o female here. I have had many problematic symptoms for many years and feel like there must be something wrong to cause them all. I have therefore spent a lot of time researching and initially found Fibromyalgia which covered a lot of my symptoms but I don't have tender areas that are senstive to a light touch and my main problem is not the widespread pain, rather the exhaustion and therefore came to find ME/CFS (not sure which). 

I've listed my symptoms below and wonder, in your experience, does it sound likely that this is one of the above mentioned illnesses or maybe something else entirely?

1.       Extreme fatigue (noticeable to others) after doing things starting around the age of 13/14 (no definite recollection of a specific illness but had bad food poisoning and gastroenteritis and other similar illnesses as a child, can’t remember specific ages though). Have to leave party’s early, sometimes can’t even go out at all. Nights out are a chore because I’m exhausted after an hour or so. Work is a daily struggle to stay sitting upright at my desk and I sometimes have to lie on floor against a wall to work or lie down in car on lunch break. Sometimes can’t manage to go to get the shopping in. Partner has to do most of the cooking and cleaning because I feel like I need to lie down. Does improve slightly and temporarily with sleep though.

 2.       Long periods of sleep if allowed (14 hours or so) and very groggy for the whole day if awoken.

3.       Struggle to sleep at night time and am easily woken up. If I wake up I struggle to go back to sleep.

 4.       Need to breath heavily which feels like a result of being so exhausted. This is particularly bad (as is the exhaustion) after eating a big meal. I did have problems with fluctuating blood sugar as a young child and have a father, paternal grandfather and grandmother and aunt with diabetes but have tested my blood sugar recently and it isn’t particularly out of whack (normally between 4 and 6.8). I notice a very sweet taste in my mouth often when I feel really ill after eating though.

 5.       Lower and upper back and neck stiffness and aches every day. Pain in these areas when stretching.

 6.       Need to urinate a lot and I don’t drink that much. I have to get up most nights to use toilet.

7.       Lose concentration easily. Sometimes my eyes sort of blur over even though I’m not in a daydream and I have to snap myself out of it.

 8.       Memory problems. Can watch a TV series three times and can’t remember what happened in it. My fiancé can remember the whole thing after watching it once and doesn’t believe I can’t remember as we watch stuff together. I forget straight forward words sometimes and have to describe them (not often enough that anyone else has noticed an ongoing problem though but other have laughed at me when I do it). I sometimes forget what I am talking about halfway through a sentence and don’t know if this is memory or getting distracted.

 9.       Chest pain on and off on left hand side of chest under breast.

 10.   Chronic IBS

 11.   Severe IBS symptoms and tiredness after even small amounts of alcohol (especially red wine).

 12.   Bad nausea most days. Rarely actually sick but if I’m physically sick I start passing out. I lie down to stop it actually happening but I’ve passed out before so am 100% certain I would pass out otherwise.

 13.   Headache most days

14.   Upper-normal resting heart rate (80-90bpm, normally around 86).

15.   Bad distance vision (-1.5)

 16.   Sometimes eyes start to black out if I stand up fast or always when I get out the bath.

 

17.   Sometimes bouts of dizziness but not that often

 18.   Shaking in muscles sometimes when they are tired and I am trying to use them or stretch them

 

19.   Restless Legs Syndrome (not every night but struggle to sleep when it does happen and is fairly often).

 20.   Usually feel cold during the day, especially feet. Overheat at night and have to have window open.

 

21.   Exercise induced asthma

 22.   Loud music and flashing lights stress me out but aren’t painful

23.   Anxiety

 

24.   Extremely painful periods (to the point where I can’t even think, 10 out of 10 on pain scale, worst pain I’ve ever had).

25.   Stiff and painful fingers and hands when doing certain things like using knife and fork, holding heavy boxes, writing.

26.   Intolerance to caffeine.

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10 Replies

  • Posted

    Google:

    Nutcracker Syndrome and Chronic Fatigue Syndrome

    The Nutcracker Syndrome (Left Renal Vein Compression) is a complex, rarely diagnosed condition that can cause every single symptom that you have. That may explain the pain that you're having in the left side of chest under the breast. This would be the exact location that this condition would occur. It's also been linked to IBS and symptoms of Fibromyalgia. There has been a lot of information over the past 5-10 years associating this condition to Chronic Fatigue Syndrome and every symptom of ME/CFS. I recently got diagnosed with a similar condition called May-Thurner Syndrome (Left Iliac Vein Compression). It's been causing me Chronic Fatigue and many of the same problems that you're experiencing for the past 25 years. Here are some of the problems it was causing me:

    Chronic Fatigue

    Anxiety

    Depression

    Difficulty Breathing

    Exercise and Caffeine Intolerance (due to increase in blood flow reaching these compression sites).

    Memory Problems

    Word Loss

    IBS

    Frequent Urination

    Body Aches

    Lower Back, Thigh, Groin and Leg Pains

    I had a stent placed in my Left Iliac Vein about a year ago and almost overnight the Chronic Fatigue and every other problem began to disappear. Doctors are starting to use stents as well for the Nutcracker Syndrome.

    After I got diagnosed with May-Thurner Syndrome, I met a lady that had just been diagnosed with May-Thurner and Nutcracker Syndrome. Not surprisingly, she has Chronic Fatigue Syndrome and I'm pretty sure all the symptoms that you have as well. She actually has a blog and support group for these conditions. Send me a private message if you're interested I can give you her contact information.

    Both of these conditions occur due to the shape of the spine pressing into these veins cutting off normal blood flow causing Chronic Venous Insuffiency (CVI). From there blood flows around these compression sites through a web of collateral veins causing just about every problem imaginable including Pelvic Congestion in women and Vericocele Veins in men. Women have a more pronounced lordosis of the spine and are usually diagnosed about 4-1 over men with these conditions.

    A good doctor to go see might be a Vascular Surgeon or Interventional Radiologist that is very familiar with these conditions. From my experience most doctors know very little if anything about these condtions so they usually go undiagnosed. It is a good idea to get checked for both May-Thurner and Nutcracker as they frequently occur together. The gold standard for diagnosing them is Renal Venography and Pelvic Venography. Color Doppler Ultrasound can be used as well. The good news is if you do have either or both of these conditions, it's possible that a simple stenting procedure could give you great relief from your symptoms. I know it did for me. Hope this might help and feel free to ask any questions!

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    • Posted

      Hi jim64727,

      Thank you so much for taking the time to read all my info and respond. I have never heard of Nutcracker syndrome and can't find that much about it online but really interesting to hear of something that could explain all of my many symptoms. It sounds like you were suffering in a very similar manner to me.

      I'm really glad they managed to sort your problem out, what a releif that must be for you!

      From what I could find online, I notice one of the main symptoms is small amounts of blood in urine and I  haven't ever noticed that. Did you have anything of this sort?

      All the best,

      Pink Sugar 

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    • Posted

      Pink Sugar,

      I'm glad you're taking the time to look into the Nutcracker Syndrome. Blood in urine can be one of the many symptoms, although not everyone has this. Many of your symptoms could be explained by the condition I have called May-Thurner Syndrome, especially the Restless Leg Syndrome. That's why I believe it's possible that you may have both, just like my friend. The pain area you described would seem to fit the Nutcracker location, and many of the problems that it can cause. Google: Pelvic Congestion Syndrome as well. Either or both of these conditions can cause PVC. Some symptoms of PCS are Frequent urination, painful menstrual cycles, pain with intercourse, and abdominal pain. These 2 conditions can cause problems literally from head to toe.

      Take Care,

      Jim

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    • Posted

      Jim,

      That is so interesting. How did you finally get the right diagnosis and what led you to the right doctor?

      Reading your comment makes me question whether or not I've been suffering from CFS all these years or if there is something else going on that can be treated. 

      I would love if you could share the contact information of the lady you know who also suffered from this condition and who has a blog. Thanks for your help. KPD

       

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    • Posted

      Thank you so much for your reply! Most doctors can't even diagnose CFS. About 80% of people with ME/CFS aren't even diagnosed. It's very likely that you do have CFS with the symptoms you've listed. I've had every test imaginable and they've all come back normal.

      My problems started to get much worse about 2 years ago. I started getting the brain fog, memory problems, difficulty Breathing, balance Issues, and my whole body started to ache. My legs and thighs felt extremely painful. The only thing doctors discovered was that I had Vericocele Veins. That's when I learned from my parents that a doctor had told them I had these around the age of 13. That around the same time that I began having the unexplained fatigue so I though they might be related.

      I decided to get a Vericocele Embolization to see if this would help. After the Vericocele Embolization, the Interventional Radiologist told me that I had May-Thurner Syndrome. He said he could see compression of this vein and collateral veins carrying blood around it. After a little research, I realized that this was the most likely cause of all of my problems that I had been having. I went back and he placed a stent in my Left Iliac Vein. It was the best decision I've ever made. Almost overnight every single problem began to disappear. The brain fog, terrible anxiety, difficulty Breathing and leg pains were gone. Within a couple days every ache and pain in my body faded away. It was only almost by accident that I even discovered I had this condition. If I would have decided not to get the Vericocele Embolization I would have never discovered that I had MTS.

      That's when I met this lady that had just been diagnosed with the Nutcracker Syndrome and May-Thurner Syndrome. She knows that these condition can cause CFS as well. MTS can cause a more "mild" form of CFS and NCS is a debilitating condition that has been associated with CFS and every symptom of CFS for over 10 years. Yet still, no doctors seem to know this. Some doctors are starting to see both of these conditions frequently in MS patients as well (CCSVI). Some People with MS describe getting almost complete relief from their symptoms after having stents placed for MTS and NCS.

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    • Posted

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    • Posted

      Jim, 

      Thanks so much for you quick reply. You seem so knowlegeable on the subject and probably can help many sufferers who have actually been mis-diagnosed.

      After reading about Nutcracker Syndrome, I came to my own conclusion that I probably do not have it. My sympotms are much more mild-my primary symptoms are extreme exhaustion even after plenty of rest and brain fog. On some of my worst days, I feel dizzy and unsteady, but these seem to subside once I've gotten some rest and relaxation. Thank goodness, I am not experiencing the type of pain that you described.

      Thanks again for sharing this information. Hopefully, it will help others. Glad to hear that you are feeling and doing much better. Look forward to checking out your friend's blog on FB. Thanks again for sharing your amazing journey. KPD

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  • Posted

    Hi pinksugar,

    It sounds like many symptoms you are experiencing are those of CFS/ME, but it is hard to be certain. My symptoms began when I was in my late 20s, as well. They began with pain all over, exhaustion even after getting enough rest, brain fog, headaches, dizziness, and intolerance to light and noise. All these symptoms fluctate and I feel best when I get the right amount of sleep (I take a tyciclic antidepressant in the evenings to help promote REM sleep), avoid stress, pace myself (I quit woring full time and started a part-time job), and exercise moderately (about 20-30 minutes 3-5 times a week). Although I enjoy wine, having too much is tough, as I have a very low tolerance to liquor. 

    I would suggest that you get a complete physical and evaluation by a doctor to make sure that nothing else is going on, though. They tested me for everthing imaginable to rule out autoimmune diseases and caners. 

    Hope things get better for you. Good luck. KPD

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    • Posted

      Hi KPD,

      Thank you for taking the time to read through my question and respond. 

      That does sound a lot like me. I hear what you're saying about pacing yourself and not working full time, I think you probably have to listen to your body from what you have said and what I've read online. It's just so difficult to explain to others why you're acting the way you are without any diagnosis isn't it? 

      I am going to take your advice and have changed doctors and will book a double appointment to go over everything. 

      Thank you again and best of luck with your CFS/ME, I hope things get better for you.

      Pink Sugar

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  • Posted

    My 14 daughter had most of these symptoms .

    All tests carried out do far have been normal therefore she was diagnosed with CFS/ME about 6 months ago. Maybe this is what you have.

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    • Posted

      Hi lesley 03192,

      Thank you for taking the time to read through and respond.

      Your poor daughter, I really feel for her. Glad they have bothered to test her to make sure nothing else is wrong though. I agree lots of the symptoms do seem to point to ME/CFS. 

      I hope your daughter does recover. Wishing your family all the best.

      Pink Sugar

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