Hi there, I am new to this site and am looking for some advice.
It all started around the age of 8-10 ish when I was getting painful feet from a lot of walking around. The pain would spread to my ankles, knees and even thighs if I kept going. This would often cause severe swollen feet and days off school because I couldn't walk on them due to being so painful. I went back and forth to the doctor who ended up diagnosing me with joint hypermobility syndrome. I was just told to live with it really as the little bit of physio I received did nothing. I have built up a slight tolerance to this since then, but it hasn't solved my issue. I did have bunions on both feet removed at the age of 18, which means I can wear shoes better now, but still get sore days and some pain 6 years later. Within the last 5 years, I have been diagnosed with IBS after constant nausea and diarrhoea. I now take immodium at times for that but try to avoid my main trigger 'sunflower' (oil, lecithin etc) at all costs. However, my main concern is what has been affecting me the most, especially over the last 2-3 years which is fatigue and the stiffness/pain. I struggle to wake up most mornings when my alarm goes off even after getting a good night's sleep. It hurts me to sit up as I feel very stiff and moving hurts. I have to move past all this just to go to work and get my daily activities done. I'm in pain generally throughout the day, but once I notice it, that's when it hurts. I'm consistently tired and I can be tired from just walking up the stairs. I'm 24 and I know this isn't how it should be. I've been to the doctors yet again, and I have been on B12 injections for almost a year to no positive effect. I had an appointment with a rheumatoid doctor who poked and prodded me recently. He confirmed my hypermobility though not on the syndrome level, but I think that is because I struggle with movement at the moment. He sent me off for blood tests and the only thing to come from that was slightly low vitamin D levels in which I'm now on tablets for. He asked about my family history and the only thing I know of is that my aunt has fibromyalgia. From the symptoms I have, it does lean towards that way for now, but I was wondering if it could be something else? I'm due to have a full body bone scan for any inflammation in my joints, but is there anything worth trying that they may not have come up with yet?
Sorry for the long essay, but I've tried to put in all the information I can think of for now and appreciate you all taking the time to read it. I'm grateful for any and all suggestions, even just things to do in the meantime to help me feel more awake.
Thanks
Written by
DoASCV
To view profiles and participate in discussions please or .
I'm so sorry you have been like this for many years. It does sound like fibromyalgia, I too have this., maybe see another rheumatologist. I also have sciatica, oa in knees, IBS, diverticulitis, degeneration of the facet joint, gastritis, costochondritis, diabetes type 2, under active thyroid, Nash (non alcoholic steatohepitis with fibrosiscaused by meds from my drs) retinopathy, I do have shin splints but I also have a feeling that my leg is going to snap-not sure if this is shin splints. I think that's it. A lot of these conditions cause pain so maybe you should have a blood test to cover everything. Please take care of yourself Lynne
Thank you for your response. I'm sorry you have to live with all of that. I did have a blood test and he did ask for everything. I know thyroid was one, but I have had it checked before to no issue. Would the bone scan show anything to do with fibro do you think? Is there any other tests I may be able to ask for that could determine if it is or not? I was really hoping it wouldn't be that, something more treatable, but I haven't been officially diagnosed yet so fingers crossed still. Thanks again and I will try to keep you updated on what they say. The rheumatologist I am seeing also sees my mother in law who has fibro, lupus and other issues too, I heard he is good, so I should get the right sort of answer. Is there anything you do to help yourself have better, more productive days? Please take care of yourself the best you can and I hope you have loved ones around who support you.
Thank you. I am very lucky to have such a great support network and everyone on here too. I usually meet up with friends/family. If I'm not busy I make myself have a walk , I use my 3 wheeled walker with a seat, it's great. Hope you have a lovely day. Take care Lynne
It sounds like you either have hypermobile Ehlers-Danlos or hypermobile spectrum disorder. These are the new names for it that were developed in 2017. At that time they tightened up the diagnostic criteria for hEDS and moved many people into the HSD category, but that doesn't mean they have less problems, but that they have slightly different problems.
Do you know about the RCGP EDS toolkit? Have a read of it yourself, and take it to your GP. GPs can now diagnose this and arrange treatment. Not that there is much, it is mostly around physio.
However, there are loads of other things you can do to keep well, and there is a lot of information on the patient support organisations such as EDS UK and HMSA
People with hEDS/HSD are often misdiagnosed with other things. The problem with the fibromyalgia diagnosis is that many drs actually don't bother making sure that people really do have it, they just give it to any women who complains of pain. Many clinicians see it as a psychological problem which leaves people with the wrong treatments.
I too had my bunions removed when I was a teen. Then in my 50s I had to have them done again. My son (he's 23) has problems with his feet too and uses a wheelchair for long distances. My pain levels (everyone has different levels of tolerance of pain) have been tolerable over the years, and I was always envious of people that could walk without pain, but it is only now in my 50s that I am taking more routine painkillers and being less active now that I have osteoarthritis. OA often starts early for those with EDS.
So have a good look at the above websites and talk to your GP about the RCGP toolkit. And maybe join the EDS group here on Health Unlocked.
I've had a quick read of the EDS one and it does also seem plausible. I do remember my blood test sheet saying eds on it, but they were all in code so it could have been something else. I could only work out the thyroid and vitamin d tests. Could it be identified in the bone scan I'm also to have? Should I potentially mention eds in my follow-up consultation if he doesn't?
There are no blood tests for hEDS/HSD, and it won't show up in a bone scan. The diagnosis is made clinically, that is the clinician has to look at the symptoms and decide whether or not you have it.
It could be worth mentioning it because sometimes clinicians only look at what their narrow speciality does, and EDS crosses several body functions.
As you have found out, you not only have pain, you have gastrointestinal problems as well. And new research has found that EDS is far more common than they thought it was, it is found in around 1 in 500 people.
I shall mention it and see what he says once I've had the appointment. Thank you
The ibs can make you hurt too I have that from meds and stiffness try to work your core because sometimes they’re not strong enough & it helps and pelvic floor. Do you go the pool? It’s good to just walk in there you can strengthen that way. Or swim. I’m hyper mobile myself I get it it’s hard and I had hip surgery in my 30’s from it for year in cartilage. There are good hip exercises you can do in the water for resistance and easier on your joints in the water. It helped me recover and I’m starting it again. If you look on Goop for pelvic exercise they have a few and stretching. I started taking taurine an amino acid and it’s helping with the stress and energy. It sounds like fibromyalgia which I have. Work on the ibs I have it too and try the pool
My core could be a bit stronger, but everywhere else I am somewhat muscular. I do like swimming, but I can't go too often as the chlorine in the water affects my skin. Even showering or the rain makes my skin go pink/red and usually itchy too. I use calomine lotion and it normally helps, but I don't use it unless I really have to.
I will keep it in mind and see what happens. Thank you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Any not bout tribunal how what happened 
not sure what wrong with me part 2.
Started as shoulder pain, now in neck and hands?
