Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi all,
I am new to the group, I am not officially diagnosed with anything yet, I'm having a hard enough time getting anyone to take me seriously enough to look past the visible issues (which there are not many).
I need some advice on what type of doctor to see next, if any, and what I can do to help myself as I am currently feeling very low due to my recent doctor visits.
A bit about me and my symptoms:
- personal: 27 year old female located in Australia. 2 young kids, 5yo and 2yo. Work part time, study part time. GAD medicated with 75mg Zoloft last year, its working quite well and al side effects subsided within 4 weeks.
- tiredness: very frequently exhausted for 12-18 months (on and off, more frequent than not), to the point of falling asleep when my 2yo naps. If a sleep in happens, 2 hours later I'm feeling tired enough to want to sit down all the time.
- urinary problems: blood frequently in urine, pus nearly consistently in urine, no bacteria in 8/10 pathology requests, but blood and pus present in most. Pain when bladder and/or bowel is full, excruciating bloating that increases pain when urinating. Urologist didn't want a bar of me. Bilateral duplex kidneys, frequent flank pain, low grade temp sometimes when flank pain is present and feeling rotten.
- pelvic pain: very frequent pelvic pain, including bladder and bowel, right sided pain and deep pain during intercourse followed by 2 days of extreme bloating and pain that affects how straight I stand (my husband made me take a pregnancy test because I looked pregnant!!). I now do not want to do anything as it hurts.
- random probably unrelated problems: frequent sore throat, ear aches and neck pain near glands, goes away on its own but returns - doctor comments on redness but no infection. Dizziness/black spots in eyes frequently when standing from sitting or laying down. Lower back pain that radiates to pelvis and groin.
- Recent laparoscopy, cystoscopy, hydrodialation, full blood tests for a host of things including thyroid, inflammation etc. Everything is clear and now I feel like I am making all of this up!
GP suspects Iterstitial Cystitis and is medicating it with a H2 blocker.
Gyno who performed lap, cystoscopy, hydro said there is no reason for my pain and I should no work on ignoring it by using CBT and acupuncture. He said my GP is wrong because my cystoscopy and hydrodialation proved I absolutely can't have interstitial cystitis, even with my symptoms being consistent.
None of them know why I am so absolutely exhausted all the time and not functioning well, no answers for pus and blood in urine, and it looks to be as if now I'm "cleared" that I'm just some crazy person with an imaginary issue.
I don't know where to go or what to do. I am so upset and just want to be taken seriously! I'm so upset and since being told all of this I am constantly on the verge of tears!
Any suggestions?!
TIA
Wow! You do have a laundry list of problems, but then again, many of us here do - including me. I can't comment on a number of yours, having no personal knowledge or experience but I do know about throat problems.
For 8 years I was going to doctors on and off about it and they would have a look, say, "It's a bit red," and give me a prescription for an antibiotic. Finally I got tired of it never being properly OK and requested a referral to an Ear, Nose and Throat specialist. He discovered that although they just looked mildly red on the surface, my tonsils were in fact badly infected. When I had them out, he reported (with amazement) that they had actually completely rotted away and there was nothing left under the skin but pus. (Sorry to gross you out, but you need to know it can happen.) I actually blame that for me having developed CFS, but have no proof.
I also have back and neck problems which are separate from the CFS but can make it feel worse. I found a chiropractor here in Adelaide who identified the fact that I have one leg 12mm shorter than the other. I now wear heel lifts which even me out and have considerably eased the problem. My neck is an old whiplash injury and it was a matter of learning what triggered it to play up and how to best manage it.
Glandular pain is not uncommon with CFS and one theory is that it can be Glandular Fever or another virus (there are several suspects) which triggers the onset of the condition. I know I have had Glandular Fever, though it took several blood tests over a number of months before it showed up.
Getting diagnosed is often a problem and I had more than one doctor who just chalked me up as a hypochondriac before I found one who was actually willing to listen and worked out what was wrong. I'm lucky enough to now have a GP who does believe that CFS is a real condition, though I've had to educate her somewhat about the practicalities of living with it. I know some of the others recommend certain types of specialist doctors but I have brain fog at the moment and can't remember what sort. I'm sure some of them will comment with the relevant information.
I hope this has been at least a little helpful.
Sigh!
goldengirl/Cheryl, I agree, something is definitely wrong. I woke up this morning and decided to ignore what the specialist has said and move on to the next plan of attack! I do agree that I have a lot on, but at the moment, I just need to keep chugging along (after all, I am not ill, right?! ;) ).
I think I will see a second Urologist. I am located in Canberra and unfortunately, there aren't many good ones to choose from - maybe I should be heading to Sydney or Melbourne. Can I ask what an internal medicine specialist does?
gotta run, wishing you well https://www.orthoelmiron.com/patient/about-ic-questionnaire?&utm_source=google&utm_medium=cpc&utm_campaign=IC+-+2016&utm_content=General&utm_term=interstitial+cystitis&gclid=CNLOjt6F_9MCFUhnNwod454MKw&gclsrc=ds http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/home/ovc-20251830