Need some help

[Tpops]

Hi there , I'm new on this and was wondering if anyone can please help me ? I was told a few weeks ago that I have benign hypermobility syndrome . I have always suffered from pain in my joints but was told it was growing pains so I stopped complaining and nothing ever got done about it but after my daughter was diagnosed with EDS my doctor done some tests on me and said that I have bhs , I have tried to find out more information about what can be done to help . I'm in constant pain and struggling with work so if there is anything I can do to help both my daughter & myself then I would be so grateful .

[cyberbarn]

Congratulations on your diagnosis, at least now you know what was the source of the pain for all those years.

Unfortunately there is nothing that can be done to cure EDS, so the main thing is to manage it. That can be done with appropriate exercise (inappropriate ones can make things worse), improving your propreiception (that is the sense of where your joints are in space) and pacing to make sure that you don't get too tired.

And the other thing is to educate yourself. Read up on all the material from the EDS support group, and be wary of some of the information on the internet that isn't evidence based.

Some aspects of EDS can get worse as we age, others might get better, but by understanding the condition and how it affects you, you should have an improved quality of life for both you and your daughter.

[Tpops in reply to cyberbarn]

Thank you Cyberbarn, we have not been given any information at all about the condition and I am at a loss as to where to search for it so if you could point me in the right direction I would be very grateful. The past couple of days have been hell with the pain I haven't been able to get up the stairs so sleeping on sofa , I don't want my kids to know I'm in pain especially my daughter as her condition is worse than mine tho not right now , I need to be strong to help her but I am struggling myself, even at work I'm in constant pain and struggling to do my full 8 hours shift , I have asked for reduced hours to help me the now till hopefully this pain gets less . Is there any specialists that you know of that I could see as not sure if all my problems are just bhs or might be something else . Again thank you for reply is nice too know others understand and that it's not all in my head my pain is real .

[Tillyray]

Hi Tpops. It is often very difficult to get this condition diagnosed due to Doctors having little or no knowledge of it, so it is good that you have got a diagnosis and can now move forward to receiving help for what you and your daughter need.

My son and I have been recently diagnosed with hEDS by a hypermobility, EDS specialist. He has made various recommendations, and we are in the process of seeing other consultants for associated conditions and will be seeing physios, OT's and a podiatrist soon.. One of the painful problems I suffer from is subluxing ankles which causes me to have constant tendonitis, tenosynovitis. I now wear ankle supports and I await splints.

I believe it is important to have a diagnosis - not only for piece of mind- because it will enable you both to access the help you need -as it has done for my son and I- you can now receive appropriate treatment, such as physiotherapy -without putting added strain on already painful, unstable joints- and referrals to other specialist consultants for other body systems that may be affected (EDS is multisystemic condition)...

You will find that often the medical profession will be unfamiliar with your condition and it's implications. Learn all you can so that you can educate your care providers, in order for them to give you and your daughter appropriate treatment and care, and so you can request what you need. You will also be better able to manage your condition.

HMSA and EDSuk websites have information and you can ring them for support and advice. The HMSA -Hypermobility syndromes association- is run by volunteers, all affected in some way. We are all here to support one another, and I am happy to help you in any way I can..I wish you and your daughter the very best 🙂 xx

[Tillyray]

ps.. I think the Doctor who diagnosed you is referring to the old diagnosis terminology. The classification, and criteria for diagnosis has now changed. It can be confusing😕 You might get a better understanding if you look on the HMSA website and also...

ehlers-danlos.com

If your daughter is 16, it would be a good idea if you both could see a rheumatologist who specialises in EDS. -A general rheumatologist will not have knowledge of EDS- The HMSA and EDSuk will have a list of consultants.You can then ask your GP to refer you both together. There is an excellent private hypermobility, EDS clinic in London.. There is also an EDS NHS specialist at the Manchester Royal Infirmary. Kellgren centre. Dr Pauline Ho. You can ask to be referred under the 'choose and book system'.

If you are feeling overwhelmed with it all, this would help clarify and prepare your treatment path ahead.It would then direct your GP to what is required.

hypermobility.org.uk

I hope this helps.xx

[Tpops in reply to Tillyray]

Tillyray thank you so much for your response I will be looking into the list of consultants and the websites you have gave me . My daughter was diagnosed around a year ago by our own GP as he specialised in bones , it took him around 10mins to tell us what it was which is fantastic but then said there is nothing they can do as she is only 15 so they want her to become an adult & stop growing 1st before the hospital would entertain us . At 1st I just accepted it but seeing my daughter at only 15 being in pain not joining her pals in their adventures and her school work is suffering as she has missed quite a bit of it due to pain , sometimes she can barely walk & I know we need to stay as mobile as possible but it's hard when your in pain . Doctor told myself that my daughter has EDS & that I have benign hypermobility syndrome, I also have tendonitis in my wrists arthritis in my thumb , brachial plexus impingement in both shoulders . Over the last 2 weeks I've had pain in all my joints so much so that I can barely walk and I'm struggling in work , I have asked for decreased hours hoping this will hopefully die down soon but when I stand I feel faint n dizzy & start sweating, I have made another appointment for GP but need to wait 2 weeks to see him I'm also still waiting on hospital for scan of my shoulders so far it's been 7 months and still waiting. I just don't know if this is all down to bhs or a few things wrong . I will be searching the websites and getting my GP to ask for specialist as this is need to know everything I can to help my daughter 1st and foremost then hopefully get help with myself . I thank you so much for your understanding as this is hard at times especially not knowing what to do or where to turn to .

[Tillyray in reply to Tpops]

I am sorry to hear how hard it is for you, although I can relate to it. It is a difficult thing to deal with at first, especially with so little help initially offered by Doctors. But it does become easier and you will learn to manage everything..

The private clinic I mentioned does have a physio department for under 16's but not rheumatologist there...Your daughter should be seeing a paediatric specialist at your local hospital who can refer her to physio and an occupational therapist for joint supports, and any implements to allow her to access education. I remember my son being 15 was 'limbo land' in the NHS system.I know how hard it is when you're ill yourself, but You will need to fight for things and make demands if you are going to get any help.

EDS is an heritable disorder of connective tissue,. Because your daughter has EDS, under the new criteria you would also be diagnosed with EDS.

The sweating and dizziness you describe upon standing are some of the symptoms that have plagued me. I am suffering with these almost constantly. I am having tests for autonomic dysfunction. This can also be POTS potsuk.org My EDS specialist made recommendations in the diagnostic letter for me to have various tests for this. I have had a 24hr BP monitor. I am due to have 24hr heart monitor, echocardiogram and to see a cardiologist. Look into this, tell your GP and ask for the tests and referral. .xx

[Tpops in reply to Tillyray]

Tillyray,

I have checked out the websites you gave me thank you so much as the one I was looking at was not very helpful. I am going to see my GP next Friday and will be asking him to send my daughter & myself to the specialist in Manchester as I think this is the only way forward for us . May I ask you do you ever get pain going pretty the front of both legs aswell as your fingers & up your arms ?? The pain is horrendous and I'm not overstretching or doing anything I don't normally do but I'm getting constant pain in my knees up the front of my lower legs up my arms & just 2 of my fingers , when I walk sometimes my left leg gives way so sleeping on the sofa is safer for me as I'm struggling with the stairs . I've been in pain since as far back as I can remember but never all of this at the one time . I was given diazepam , morphine , naproxen , sertaline & amitriptyline all with the space of 2 weeks & to say I was out my face is an understatement, I have had to stop taking a couple of them just to be able to function but the pain seems to be getting worse and thinking maybe it's the pills making it worse. May I ask what you take for pain relief ? Thank you again as the information you are giving me is helping me loads xx.

[Tillyray in reply to Tpops]

I know just how awful the pain can be.I am sorry to hear how hard it is for you right now. Most of us have been on a long road before receiving any help or treatments, so we can relate to what you are going through.

With this condition, We can all suffer with varying degrees of pain, and it can move around and come and go..

Seeing a specialist with knowledge of EDS will really help you to get the appropriate treatment and understanding. You will then be able to move forward in a more positive way.

I have constant unbearable pain in my feet and my ankles. I wear supports and need a walking stick. I have leg pains, and my legs become painful and heavy when walking and standing. I need to sit and rest as I go along..I've had leg pain since a young girl (which is a long time🙂). Other joint, muscle pains and chronic fatigue are persistent these days. Some days worse than others and I have a DVD/ book reading plan in place for those times🙂. Frequent bowel problems and other symptoms come into play and I am often incapacitated. There are better days where pacing is key, but energy can be used just getting dressed! I'm learning to manage it better now.. I use hot and cold packs / bottle and sprays. I have an 'Actipatch' for my trapezius/ neck muscle pain. It is worn on the back and I find it helps.It can be bought at Boots chemist. I take pain meds and regular Gabapentin which helps my neuralgia pains.. It can take time finding the right medication that suits..Since my EDS specialist appointment I am in the process of getting appropriate treatment,and having associated conditions investigated. I am hoping things will be better. Splints will definitely help me I'm sure!..

I accept my condition. I try to educate others -Doctors and friends, family- so they can better understand it.. and accept me🙂

Please feel free to send me a private message. I will try to help.. You can also ask questions in a new post if you wish, as all the members are lovely and glad to help.xx

[Tpops in reply to Tillyray]

I have sent you a private message or atleast I hope it was you . It's good to get to talk to someone who has the same as my daughter and myself. I have always just accepted what doctors told me and to be honest I guess back then it was not known plus I never had pain in all my joints I always said when I was growing up that it was my bones that hurt , I did see a specialist when I was about 12/13 and vaguely remember him telling my mum that the cartilage in my left knee was damaged or something & if they operated on it I would be a wheelchair for a while , I don't know why I never got the operation & neither does my mum she can barely remember it , on & off I've suffered with it but never had all the pain together so that's maybe why doctors never put it together, I have just been lucky in having a doctor that knows about it .

[Flexi]

Hi Tpops,

Lots of us with EDS also have POTS (Postural Orthostatic Tachycardia Syndrome) which is what causes the dizziness, heat intolerance, racing heart/palpitations etc., partly because our veins don't constrict correctly to force blood up to our brains when we get up or change position. It is a form of Dysautonomia. It may be worth asking to be refered to a Neurologist to explore that. In the meantime, try lying flat on your back, feet up, clench your hands and feet repeatedly and drink a large glass of cold water. This can help relieve the symptoms of a POTS attack.

As mentioned already, exercise is essential even though we find it difficult. Look into Qi Gong (check Youtube) which is a seated Tai Chi based exercise which i find very useful when I'm in a flare up. It's so much harder to regain body conditioning than to keep it by gentle regular exercise.

I use supports and braces, particularly on my wrists, ankles and back, when needed, Oval 8 ring splints for my fingers when needed, and i have Cool Towels (got them on Amazon) which helps with the hot flashes and heat intolerance. You wet them, snap them out like a whip, and they stay really cold. And I've recently started using a Tens machine for my back and shoulder pain which i find very beneficial. Also, Aloe Heat Gel can help for muscle and joint pain.

I was referred to Stanmore Hospital for a 3 week residential pain rehab program which i did last summer and it was fantastic. It's changed how i deal with my conditions and i made some amazing friends that go through the same, and worse, as me, and we're still in touch a year later. Perhaps ask your GP about that.

And Snap! I've been sleeping on my sofa for the same reason as you for most of the last 5 years 😃. I have a commode in the living room, which i dont love admitting to but it helps. Spend some time researching Pacing. Learn to save your energy, when to push and when not to push. Good luck, know that your not alone x

[Tpops in reply to Flexi]

Hi Flexi

Thank you for your help in will definitely be doing the QI Gong as I have let myself go and being over weight is definitely not helping me so gentle exercise with healthy eating will hopefully help me , I did make the mistake of trying boogie bounce & weights which was not too bad at the time but hurt like hell afterwards so now I no I can't do them i will be looking at what I can do . I haven't been giving any information at all about condition until I came on here & I can't thank you all enough for the help & information I've been receiving. Hope your doing good & thank you again .