Hypermobility

[John-bacon]

Hi all.

Since receiving my daughter diagnosis of Hypermobility have researched the condition and it resembles my symptoms the doctor has now classed as "nerve problems in the lower back". Is one of the symptoms not being able to gain weight as this has been a problem for me since I was young and have never had a complete explanation.

[Tillyray]

Hello John. I was told I had Hypermobility by a rheumatologist, and because of it I was told my son would also have it -he has similar symptoms and is also a very slender build- I was discharched without any ongoing support or help, despite having numerous debilitating symptoms and often suffering incapacitating illness. years before I was diagnosed as having 'fibromyalgia'. I also have nerve related symptoms along with others.

I did my research on Hypermobility, and pieced together my symptoms and those of my sons, and realised they fitted EDS..Being hypermobile does not necessarily cause a problem, but along with other symptoms, Hypermobility can cause severe pain and illness. As part of an EDS condition, it can affect any body part or system and these can be serious -it can affect the heart and bowel etc- and requires a correct diagnosis by a specialist in Hypermobility EDS..

A GP or general rheumatologist can not diagnose any EDS condition as they do not have the specialist knowledge, they can sometimes only recognise hypermobility but not the complications' that can come with it..

I spent several years suffering and trying to get help for my failing body. After unprovoked tendonitis, tenosynovitis in 2015 which left me in constant pain with increasing disability, I found the strength to pursue a correct diagnosis. After my research and help from this site, I made appointments for my son and I to go to the private Hypermobility unit in London. We were both diagnosed with Hypermobility Ehlers Danlos Syndrome..The help and support we received has been exceptional, and we are now awaiting further referrals for our offending body parts/systems by consultants in the NHS...

From what I have experienced I would advise, if your daughter has been diagnosed as having Hypermobility and she has other symptoms, I would push for her to see a specialist in Hypermobility, EDS... Family history is an important part in a diagnosis of EDS.

You can find information on the HMSA and EDS websites.

hypermobility.org

ehlers-danlos.org

Best wishes to you and your daughter.x

[cyberbarn]

It makes sense that if your daughter has it then so do you as it is a heritable genetic condition. But it can be a mistake to assume that all that ails us is down to hypermobility, which ever variety we are diagnosed with.

Not being able to gain weight is not one of the symptoms of hypermobility as such because not being able to gain weight could be caused by a large variety of different things. And you may well have nerve problems in your lower back, and they may be caused by certain joints being hypermobile and pressing on nerves, but nerve pain in the lower back can be caused by other things too, and not everyone with hypermobile joints will have nerve pain in the lower back.

this is one of the reasons why people are diagnosed with syndromes like this, but then get discharged with no treatment plan, and then go to their local community physios for exercises for their joints, or dieticians if they have problems with food, or a neurologist if they have problems with nerves, or podiatrists if they have problems with their lower limbs. They have to treat the symptoms regardless of the diagnosis as there is no 'cure' for hypermobility.

And not being able to put weight on might be a good thing as you get older. I couldn't put weight on when I was younger, then I started drinking beer by the pint when I met my husband. The weight went on, and I wish now at age 50+ I hadn't gained that extra weight as it gets harder to loose as we get older, and the heavier we are the more strain is put on our joints!