It’s very daunting writing this post, really hoping someone in this community will be able to point me in the right direction. Thank you for taking the time to read my ramblings!
So, I am 25 years old and 3 or 4 years ago was when I first started trying to pursue a diagnosis for my symptoms. It started out with back pain where if I lay in the wrong position for even a short amount of time (usually lying flat on a hard surface) I would be unable to move my torso and would have to wriggle my way out of the position with my arms and legs. I also started getting terrible fatigue, and then sharp pain in my lower abdomen (felt like it could be my ovary). GP said nothing was wrong with my back and various blood tests have been done, I have consistently low vitamin D and iron and some other stuff has been slightly abnormal but not a concern according to GP, eg. Thyroid. Over the years I have developed more and more symptoms, joint pain is a huge one, knees, hips, shoulders, and more recently my wrists and knuckles (has been less severe with warmer weather). I get dizzy/light headed easily, often after a period of physical activity, sometimes I feel so out of it I can barely process sentences and slur my speech. All my limbs get very numb and then painful quite easily, and recently I was woken up in the night by stabbing pains all up my right leg, I was screaming from the pain and my partner has to rub my leg for 20 minutes until it subsided. Food has become a huge issue, lots of foods make me very sleepy, which often makes me anxious to eat especially at lunch time when it has the potential to derail my whole day. I have cut out gluten as a result, which I think has made a bit of difference but to be honest I’m not entirely sure, I just wanted to take some kind of action after years of doctors ignoring my symptoms and having no treatment suggestions other than ‘take a walk’. My periods are often heavy and irregular, and I get hormonal mood swings. I frequently bleed when I pass stools, GP has examined and said no problems there. I sometimes get sharp chest pains, sharp pain in my breasts, also sharp pain that feels like it is near the base of my spine, and I get regular headaches. I had extensive blood work done at the start of the year and the only thing the GP flagged was some kind of inflammatory marker associated with rheumatoid arthritis, got a phone appointment with rheumatologist, they said it probably wasn’t RA but wanted to bring me in for an MRI, haven’t heard anything from them, only contact number I can get hold of for them doesn’t pick up.
Developing all these symptoms has been life changing, my mood is often very low as a result of missing out on things in order to conserve energy, and I worry about being able to keep up with work/household chores if things get any worse. The lack of support from GPs has left me feeling isolated and paranoid, if they aren’t too concerned with what I’m telling them, am I making it up/exaggerating? I don’t expect anyone here to be able to help me with a diagnosis, but I’m really hoping that some of my experience might resonate with someone and they might have some suggestions of what tests I should be trying to ask for/any other advice?
Many thanks,
Beth
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Beth984
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Were your thyroid results abnormal ? not clear from your post. You need to get a copy of your results and post them on Thyroiduk forum for advice, your symptoms could well be thyroid related. You should insist on further tests for the rectal bleeding as this is definitely not normal, a referral to a Gastroenterologist at least and a colonoscopy would be something to ask for. I would suggest you try a different GP as your current seems a bit to unhelpful !
Hiya Beth,I know you're pretty new to the site but there will be a handful of people on this site and lots out there who have fallen through the cracks.not being diagnosed properly and feeling so frustrated cos their life is on hold.Beth,I know you're struggling but can you change docs in your surgery,if not,are yu mobile enough to switch surgeries and get assessed from scratch by GPS who have no previous dealings with yu and vice versa.Someone with fresh eyes.Also,maybe a muscle massager could help with your pain all over.Another option is to look for all health care centres in your area like a walk-in-centre or the like that deal with health issues,separate from a gp surgery.They will treat yu hopefully with no agenda,they should have more time to deal with each ailment.
Please , please see another doctor ASAP. My daughter went back and forth to her Doctor for over 3 years with various symptoms, which were never taken seriously. To cut a long story short , last year she was taken into hospital with appendicitis, whilst under anaesthetic the surgeon found a growth on her bowel . Six weeks later she got the results , a very rare type of bowel cancer . She was taken into hospital 2 months later and had quite a large part of her bowel removed . Thankfully they have managed to remove all the cancer but she has to have check ups every 3 months . Don't be fobbed off , stand your ground and firmly , but politely ask for a 2nd opinion . I wish you well & hope you find out what is causing your symptoms very soon xx
Hi, I truly am concerned for you. You need that MRI ASAP. Please contact the hospital where you are meant to be having your MRI and ask to speak to PALS. They are the patient liaison service and explain that you can’t get hold of the MRI team. They can find out what’s going on for you .
One possibility that could account for many of those symptoms is the connective tissue disorder Ehlers-Danlos syndrome.
Have a look at the RCGP toolkit and discuss it with your GP. It might not be, but many with the condition have the same or similar symptoms to you, hypermobile EDS is much more common than they originally thought and often goes undiagnosed. It takes an average of 10 years for a women to be diagnosed.
you also mention heavy and irregular periods, I take it they have eliminated the possibility of endometriosis? That is another condition that is often overlooked in women.
Hi beth, sorry to hear of your plight. You do as others suggest need to persue the Drs on this one . There are several things it could be in fact sounds like more than one issue to me. Some of the internal medical things can cause lots of other symptoms and of course the stress of being fobbed off only adds to the concerns you have. Fresh eyes on the symptoms might help like a different DR . Best wishes and good luck. Do let us know how you get on.
Beth. I feel for you. Maybe you should find someone who does womens health and but also is an endocrin Dr. Sounds like it could be neurological or or your adrenal or thyroid. I have had the same symptoms. The biggest difference I felt is when I went off caffeine and processed sugar. I know this is hard but I would try itIf you need help finding an endo DR go into your nearest hospital and visit patient care. Don't stop until you get the right help. Advocating for ourselves is our best friend
If patient services can't help you can go to the director . You can find th on the staff listing of the hospital. I am assuming that your GP is in associated with a hospital?
I wonder if EDS has been suggested at all, as lots of your symptoms seem to fit with that diagnosis. As you have already had lots of tests your current GP might not be right for you, as it sounds like your case needs a new set of eyes.
I would see whether you could see a different GP perhaps in a different practice, and tell this new GP (as soon as you can) that you transferred because you are still currently suffering from this distressing mix of symptoms and felt like your case needed someone new looking at it. The new GP will be grateful for you being open about your situation. Good luck.
I have similar symptoms which became worse over the years . I am in my late sixties but the problems started when I was young in my early 30s. I am now following an anti inflammatory diet and also take B12 vitamins. Have you been tested for your electrolytes.? For me taking B12 and the anti inflammatory diet has helped me to get a life back.
Sending love 💕 have you looked up Endometriosis or Adenomyosis before? Very common diseases in women but can take years to diagnose,mention having a diagnostic laparoscopy. Concern from me was the heavy irregular bleeding and after bowel movements.
Hi Beth,I have had some of the same problems and it sounds as though, like me, you probably do have more than one problem. I have also been disbelieved by a GP and although I eventually was referred to a spinal unit and needed surgery (subsequently had another). It took time to sort out other problems as well. My spinal issues began in my early twenties but nothing was really done until I was 50! Don’t wait that long, as others have suggested, see another Dr ASAP. You will likely need more than 1 referral.
If you can afford it it may be worthwhile having an initial private consultation, although I prefer NHS - which is overrun, especially now.
helloyour story seems to be filled with a lot of pain...
I'll write from my experience, years of struggling with pain and whole bunch of symptoms without any specialist taking it holistic or even seriously 😕
unfortunately it sounds very much so like fibromyalgia, look into it more maybe and see if you think that might be it. then find a specialist that deals with it and actually is knowledgeable about it (many many doctors don't know much about it or even seems not to care about it...)
Even if "it fits", you should check for any health issues with your abdomen (colonoscopy for sure) stomach (gastroscopy), full thyroid check-up (blood and usg) and blood tests including witamin D, b12, iron also liver and kidneys function, hormones...
Fibromyalgia mess up your whole body, but by bit more and more to the point where you may be unable to separate the symptoms by it's reason.
There's also a trouble sometimes to tell what was the reason to develop fibromyalgia, so it's important to do full check up to not just assume "I have fibromyalgia so everything may hurt just because of me having it".
Anyway, diet definitely may help, not only if it is really fibromyalgia. Digestive system gets a bit of a rest if it is out on a right diet, even if you don't have any allergy, celiac disease or food intolerance. IBS is very often connected (or one of symptoms as some prefer to call it) with fibromyalgia.
Tough life, I won't lie. But I still hope that your situation won't look like mine and you'll find a way to cure your symptoms 😊
Also, chiropractic may really help you, and with combination with a proper massage it may relieve a lot of pain. Honestly, that part helped me the most in my journey through fibromyalgia 😊
I think you need to follow the advice of cyberbarn in their comments here and ask to be referred to a specialist regarding the possibility of you suffering from EDS Ehlers Danlos Syndrome. Having said that I hope you have a better reaction to your request than my daughter who has been suffering from all the symptoms you describe plus the added one of several dislocations of various joints over a number of years. It has taken 5yrs for her to eventually get a referral to a specialist hypermobility centre almost two years ago but because of the fact that hypermobility centres are few and far between in this country they had put a stop on taking new referrals and then the pandemic came along which means that they're still not accepting any referrals. The low vitamin D and iron levels are very likely to be causing the light headedness and certainly the tiredness. I have a problem with keeping my iron levels up and have to have iron infusions from time to time but when my levels are low the tiredness is unbelievable and I also suffer with dreadful cramp and pains in my legs, particularly at night. The minute I've had an infusion the cramp and the pain eases and the tiredness eases after a few good night's sleep. Your GP sounds as though he shouldn't be allowed to practice, please change to another practice and start afresh. Good luck.
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