Anyone under doc for Hyermobility Syndrome

For all your questions and experiences of illnesses associated with FM e.g. thyroid, IBS, TMJD etc.

Moderators: perseus, *Lisa*, FluppyPuffy

Anyone under doc for Hyermobility Syndrome

Postby vicky_nunn » Thu Apr 05, 2012 12:26 pm

Hey all, I havent been on here for a while...... :evil:

As you will see, having a problem with hypermobility... Had it all my life...

Having flare up thats hit my joints, apart from hypermobility i have bursitus in hips and knees.. They keep swelling, pain doesnt go away, did ease up yesterday but sometimes is continuously there!

Looked up about HMS and seems some have no symptoms but some get very painfull joints. . .Wish i didnt get symptoms!!

Is anyone under a specialist for HMS?? What sort of specialist??

My regular meds im on is Cocodamol 15/500 2X3 times a day, SR tramadol, amitryptoline 125mg. . Ive been taking ibuprophen on and off, and volterol over counter, this will be third day. I will have to go to GP next wk see what she can do if anything. . What i want to know is, if there is anyone who has HMS and is on any other meds than what im on, what do you find that helps??

I dont want to go on anti inflamatories regularly coz i get bad acid anyway and on omeprazol to control it so dont want to damage my stomach more so.


Im expecting a letter for the pain clinic, if dont get it soon i need to tell GP but maybe they will be able to help with HMS.

Vicky.xx
vicky_nunn
UKFM Member
 
Posts: 47
Joined: Sun Dec 19, 2010 3:27 pm

Re: Anyone under doc for Hyermobility Syndrome

Postby Ldyalb » Thu Apr 05, 2012 7:05 pm

I was previously under two Rheumy's in London for Hypermobility and Fibro and am about 6.5 weeks in to a 10 week wait to see a new Rheumy locally although this has more to do with the suspected autoimmune arthritis than the Hypermobility.

A lot of people who have specialist help for HMS get it from a Rheumy. I had an excellent Physiotherapist in London who was the first to spot what was wrong with my joints. He had Hypermobile ankles himself (ankles are my worst joints). The pain clinic should be able to help, for focused support though I'd advise a Rheumy and Physio, especially if you get a lot of dislocations or sublux a lot.

I too get bad acid reflux, used to take Diclofenac. My new GP has put me on an anti-inflammatory called Meloxicam which is apparently much less abrasive on your stomach - been on it for almost 3 weeks and no reflux attacks which is good. It could be worth looking at some gentler anti inflams which can be used to help treat acute bouts of the pain, especially if you get any swelling after a joint goes wobbly on you. Your GP should hopefully be able to advise you about that.

Basically Hypermobility itself is very common, and often doesn't cause much problems. But in cases where the degree of hypermobility is more severe, or cases where it's painful, that's when it becomes Hypermobility Syndrome, as opposed to just Hypermobility. It's quite common for people with HMS to also develop a chronic pain condition such as Fibro or CFS.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
User avatar
Ldyalb
UKFM Regular
 
Posts: 1667
Joined: Sat Nov 13, 2010 6:46 pm
Location: Lincolnshire

Re: Anyone under doc for Hyermobility Syndrome

Postby animalhouse » Sat Apr 07, 2012 9:51 am

was diagnosed with hms/fibro at same time at age of 40. didn't really understand what it was so when esa asked in early days how it affected me i just replied "don;t know i have had it all my life i guess".

as a kid people use to talk about double jointed and i just knew i could bend thumbs back but hadn;t really known anything else, i also have never broke a bone all my life so just assumed i was boring as had never had any other illness etc until pregnancies in twenties.

when i was 6 months preg with one of kids i tripped on holiday on a bad paving stone in hotel coplex and went over on ankle and heard a rip/crack was in agony. did xrays then and no break just torn ligaments they said in spain.

still not idea until diagnosis 10 years later. i am not sure of difference with fibro/hms as just been i pain since crash 2 years ago in baack, hips, ankl.es, writs since.

am under rheumy who was really good gave me steriod injections in hips/wrists for bursiitis/fibro and helped but trying to get referral again from new doc and has taken year so far. :roll:
am on dosulepin at night and another anti d in morning (citalopram) and these are also suppose tohelp with pain aren't they and tramadol.

i use usuaal heat packs, tens machine, massage, reflex, sswimming, phsyio, hydro to try and help relieve pain sometimes.

everythign just seems a short term fix or therapy to help you get by. :-) :-) take care.
User avatar
animalhouse
UKFM Regular
 
Posts: 1170
Joined: Fri Oct 08, 2010 8:42 am
Location: Derbyshire

Re: Anyone under doc for Hyermobility Syndrome

Postby vicky_nunn » Sat Apr 07, 2012 7:52 pm

Thanks for replies.... Ive known ive had hypermobility for a long time, and i know its they syndrome as i do get a lot of pain with it.

Hypermobility is something you would have all your life, i dont think it will just develop. Ive pretty much always known ive got double jointed joints and from the age of 10 i started getting horrendous pain in my knees. At the time docs just put it down to "growing pains".

Yeah right!!

I was diagnosed with CFS when i was 21 and recently been diagnosed with Fibro, cant remember when they told me i was hypermobile but ive know for ages! Fibro is different to hypermobility but i know it can be something you get when you have fibro or visa versa. . .

I have had it where my knee locks and over the years has got more and more difficult to get back to normal!! But im pretty sure it wasnt my knee cap...

Just annoying when your trying to get by on the pain killers you have and they not working, but then again my friend told me that pain clinics look at trying to improve pain but not at getting rid of it completely as cant usually get rid of it all.

Anyone else???

XXX
vicky_nunn
UKFM Member
 
Posts: 47
Joined: Sun Dec 19, 2010 3:27 pm

Re: Anyone under doc for Hyermobility Syndrome

Postby blueeyes64 » Fri Apr 13, 2012 10:07 am

When I took my youngest son (12) to his Dr at the hospital a few weeks ago regarding his reflux I mentioned about the way his arms easily flexed backward and how the elbows looked out of joint sort of and also about my younest daughter (18) and how she easily bends her thumbs back onto her wrists ( she also has reflux btw) and her bad knees at such a young age.Also my mum used to call me double jointed as a kd as I could get into weird positions and the Dr said we are probably hypermobile.My eldest son(20) often complains of a bad back and stiffness etc and I think although he has a manual job in engineering he is bad for his age sometimes.My ypungest son often gets weak ankles and stiffness in his shoulders and neck and I worry for them as they get older.I read up on hypermobility and the different levels from Ehlers Danlos to just being hypermobile with only a few problems .I think we are on the milder end hopefully :-?
I was talking to a mum who's 3 year old son would cry and complain that his legs hurt and how he wanted carrying a lot as he couldn't walk, and other joint pains and she had found out that he had Ehlers Danlos syndrome as well as food allergies and reflux..It seems that allergies, reflux, hypermobility, FM and such things commonly are found together.We are a very atopic family with pollen, pet, dust, chemical and food allergies as well as reflux, asthma and mild eczema.
I think it makes diagnosis very difficult when you are dealing with lots of issues and makes it hard to distinguish between all the diseases and syndromes as they often over lap in symptoms.Whatever is causing all the pain and stiffness in my joints I just wish I could magic it away and not have to summon up the strength a lot of the time to just get up off the sofa..I do push myself a lot of the time though as I fear ceasing up totally lol ! I figure if I keep working the joints and pushing through the pain that it does ease the stiffness a bit but there is a fine line between enough and too much which leaves you exhausted.I see taking the dogs for a walk these days as a punish,ENT rather than enjoyment but I know once I get moving that it loosens me up a bit.Im struggling typing this and keep having to re do it, my ams and fingers are stiff too and my iPad keeps putting words I don't want lol ! Time to give up !
blueeyes64
UKFM Member
 
Posts: 226
Joined: Thu Oct 27, 2011 10:19 am

Re: Anyone under doc for Hyermobility Syndrome

Postby blueeyes64 » Fri Apr 13, 2012 10:46 am

Vicki forgot to say I had really bad case of bursitis in my knee for over 10 years and had to have op on it 14 moths ago due to it ballooning and getting infected.Also get lot of pain in my hips too.
My sons Dr said she wasn't sure of it was reflux as it didn't show on 2 bariums ( from what I've read this isn't uncommon though) and so we now are to give his Omeprezole every other day.He had a bad episode the other week.We were out buying paint and stopped to have a KFC in the car.My son took a couple of bites and then jumped out of the car ( always a bad sign).I got out and he was trying to induce vomiting as something was stuck in his throat.He managed to vomit a couple of times and said he felt a bit better and got back into the car.I went into screw fix to collect something and when I came out hubby was shouting to get sons epi as he couldn't breathe ( he has food allergies too)My son got out of the car and was clutching his chest and very upset.I could tell it wasn't allergy related and so tried to calm him down as he was walking up and down and upset.I said to try a small sip of drink and he did and eventually the pain in his chest subsided but then he was spitting up loads of mucous.When these episodes occur it is always to chewy things like meat/ bread etc.The Dr said she thinks it might me a mucous plug caused by allergies but after the incident last week I am leaning more toward reflux again, what do you think ?
I tried to contact his Dr but was told she was busy on the wards and that the message would be passed on, that was over a week ago now and still havnt heard back !
My hubby gets similar episodes when he is eating and says it feels like a heart attack or something ( he has had checks on his heart recently and all is fine).I have also looked into eosonophilic eosophogitis as the symptoms for that are very similar and is connected to food allergies.
I asked for son to have a endoscopy with biopsies just to check and put my mind at rest as this is the only way to diagnose the disease, but the Dr said a GI Dr would have to refer him for that and so far I havnt heard whether he is tot see one or not.
It's so frustrating as we have been dealing with this for so long with my son and don't seem toever get a clear diagnosis.She even intimated that maybe it has become a habit for him to do this ! Why when he is eating his favourite meal would he want to induce vomiting and go through pain I ask you ! It's not like we are forcing him to eat food he doesn't want as then it would make sense to say that .
I could get him refered to a hospital which is about 18 miles away but it is a trek to get to, but at least maybe we would get a difinitive answer.Anyway, sorry to go on and take over your post but it is something that niggles away in me constantly :-x
blueeyes64
UKFM Member
 
Posts: 226
Joined: Thu Oct 27, 2011 10:19 am

Re: Anyone under doc for Hyermobility Syndrome

Postby vicky_nunn » Sat Apr 14, 2012 10:12 pm

Hi blueeyes64,

Dont worry about taking up my post, i know these things are v frustrating, it must be more so if its you child your trying to help!

When you talk about reflux, are you refering to acid reflux?? (just not sure if theres an illness or if you mean acid reflux)

I take imeprizole, its v good. I didnt take it for a couple days the other wk and it got bad again, so its worse when i dont take it.

Im going to a Gastro specialist soon for acid and IBS things just to check theres nothing else going on.

I went to GP the other day and went back on max cocodamol coz of the pain and i cant take ibuprofen anymore as after just taking it for a wk reflux getting bad.

I hope you get on better with all your things. Thank up for your post

Take care
vicky_nunn
UKFM Member
 
Posts: 47
Joined: Sun Dec 19, 2010 3:27 pm


Return to Associated and Other Health Problems

Who is online

Users browsing this forum: No registered users and 3 guests