Is here someone with HMS symptoms but not HMS?

[SAMMY]

Unfortunately no one knows what I am talking about. I don't have family near me. That was my choice!! I have to go alone and hope that someone listens. I need arguments to back me up!! SAMMY

[alaskastephanie]

I was diagnosed by a rheumatoligist (who I went to because I am in constant pain due FMS) and in the letter to my GP, he said I was "surprisingly hypermobile". The thing is, apart from my wrists and fingers, I can't bend myself in weird ways. I don't look bendy and can't contrort my joints into random positions. Could it be a misdiagnosis? The pain in my joints is awful but as I can't bend them (more than most people can), how can I possibly be hypermobile?

Hypermobility can be reduced over time by lack of movement - hmsr's tend to not want to move those things that hurt, especially those that have chronic pain. It isn't always wide spread. I am quickly beginning to believe that dr's throw Fibromyalgia out when they don't know why we are in pain. I have had a rheumy diagnose me with almost every autoimmune/ rheumatological chronic disease that she could possibly rationalise. I think that I counted over 10 disease she said I had. I don't have any of the diseases she said I had but since she was stumped she was just going to give me poison to take and do away with me even when it was obvious that the drug was making me ill and not helping me much.
Thank God I was able to go to the Mayo Clinic in Minnesota when I still lived in the USA and I got diagnosed with Ehlers Danlos III which may or may not be either related or the same thing as HMS. My worse joints are all of my vertebrae my ankles, knees, hips, shoulders, and small joints of the hands and wrist. Ok well that is a lot but it all started when i was young and they thought I was klutzy and kept spraining my ankles.
I said all this to say that if you think that even if the joint isn't obviously hyper mobile your body is working hard to keep joints together and that in it's self can cause pain. so your ankles are loose but the rest of your body every time you put weight on them everything else is compensating. so knee's, hips, back (all the way up) are compensating for weakness in your ankles.

[lil_miffy]

fibro, CFS/ME, hms and the other types of Ehler danlos are all very similar in terms of pain and fatigue so its no wonder we get differnt diagnoses. I thikn alot of people who are diagnosed have had fibro,CFS/ME and similar things diagnosed first before the 'lable' is changed to hms. Also dont forget that fibro and CFS/ME are very common with hms and much easier to diagnose because of being more well known so its very possible to have one of these diagnosis as well as hms but the hms just takes longer to get noticed.
Also alot of people diagnosed with hms then go on to have that changed to classical or vascular type of Ehelrs danlos. Im expecting that my hms diagnosis will change to one of the other types of EDS becuase i just dont have that much problem with dislocations or joint placement issues. my main problems is th ewidespread pain and fatigue and my skin has alot of problems in terms of healing and bruising. But i think we tend to go through a few different labels on teh way to the correct diagnosis becuase of the overlapping of symptoms with these different conditions and the fact that alot of us have fibromyalgia and other things on top of the hms/eds.

this is why drs need to know more about th connective tissue disorders and the associated conditions so that we dont have to go through this over and over again.

[Baiba]

Is here someone who's joints started to fall apart slowly, gradually but constantly without stop and who does not believe having HMS? I don't believe because I didn't have any signs in childhood, teenage years and I don't believe I have it now. main common point with all people here is that my ligaments throughout (literally throughout) body becomes weaker and weaker. But It doesn't mean that I can do movements like most of people here - movements which are good for gymnastics, dancing, acrobatics!!! I have never (and am not) been able to perform it! I am stiff! But my ligaments are becoming weaker. I can say I was quite stiff child (like average kid). Even now I am "stiff" No other problems, no laxity in childhood. All tests, analysis are good but ligaments become weaker and weaker with every month. It's like all ligaments are dissapearing slowly. It's very strange and I don't have words enough to describe (because it sounds contradictory) but I hope to find here some people with the same problems.

[leashy11]

Not everyone with HMS has the ability to do moves that are like contortionists, many people have very subtle excessive mobility in jonts. Another point to remember is you may feel stiff because your muscles have tightened to try and stabilise the joints. I wasn't aware of being hypermobile until I started having problems and only then did I notice I could move most of my joints further than other people so it wasn't really obvious to me until I started to check. My back is as stiff as a board to me but moves as much as someone's who hasn't got HMS, likewise my neck has muscles so tight my physio is amazed when I display completely normal range of motion and even excessive in some directions. I would say if you haven't got HMS and a doctor or physio has verified this maybe some tests such as blood tests might be a good idea. I'm not sure what else to suggest as this is a HMS forum so that's really what we all seem to mostly know about. How do you know your ligaments are getting weaker if your joints aren't loose at all? I'm not sure I understand how you've established that.

[gila]

stiff or "stiff" ?

first time I ever heard I was hypermobile was when I was referred to physio because of a very painful and very "stiff" shoulder...only to be told that my shoulder wasnt stiff at all, but actually had more movement than normal...
(and I was 'stupidly' being told by physio that hypermobility doesnt cause pain )
the following years more and more joints became pained and feeling "stiff"...

and I was carp at nearly all sports as a kid (swimming was ok)...

I'd suggest get yourself to a doc and have some tests for other things that can affect joints/ligaments (some suggestions are in my post in answer to your other thread)- if these tests come back negative- then maybe try to be referred to one of the HMS clinics (if you are in britain...?) or to a rheumy that has experience with HMS/EDS (connective tissue disorders).
xxg

[Baiba]

Thanks Gila! But I was really stiff - i mean, like most of kids. If I wanted to do bending, stretching, I had to warm up a lot to perform it (like most of kids at school or at sport classes). There were some girls who were bendy but I could never do like they could.

[gila]

apart from being v clumsy I was a 'normal' kid- I certainly couldnt do what the sporty bendy kids could do- never could do the splits or other amazing 'bendy tricks'... the only bendy 'trick' I could do was the swan neck deformity with my fingers...

have you checked out the "beighton score" on the main page of this site?
the too bendy elbows/knees arent anything like astounding 'bendy tricks'...

and as leashy wondered... what exactly is happening that makes you think your ligaments are stretching further and further now?
how did you begin to wonder about hypermobility and hms?
what tests did you have?
and as they came back negative- what did doc suggest the problem might be?

bottom line though...I really think you'd best try to find a doc that knows about HMS/EDS and see what they think...I'd say before you start looking into poss expensive 'treatments' (like prolotherapy)... try to get a firm diagnosis first...
xxg

[Baiba]

thanks Gilla,

only things I can do is one thumb and fingers a little more than 90 degrees back. thats all. I remember as a kid I was trying to turn my fingers as much as "tricky" kids could and never could.
my tests were X-ray, MRI and general blood tests. I went to gynaecologist and cardiologist as well. I am not sure about competence of doctors in HMS field because discovering that hormones should be checked (from your posts) was a big surprise for me. I think that should be doctors competence. I went to GP and asked about list of hormones I want to check, explained why and she agreed. After getting results I was more surprised because only hormones I was checked about were Thyroid function tests, Serum free T4 and Serum TSH. Thats it! No "woman" hormones - she just picked the first hormone which was on my list and checked it for me. Maybe misunderstood. I don't wanna blame her. So, I have hope to discover something wrong with "woman" hormones. I will go for tests again. I know it would be better to wait for appointment with competent doctor in HMS field but you know how long time referral things take. I would like to start all these tests already before I get appointment.

The reason why I think I don't have HMS but some other disorder is because definition of HMS states that it's genetic disorder. There should be signs all the life along but pain could appear any time during the life. It could be reason why many people doesn't know they are HMS until they start to feel pain and visit doctors. Do I understand it right? Until 22-24 I was running 10km without problems, swim 4 km in all styles, jump with parachute or do stretching with any part of body and don't feel any cracks at all! If it's genetic, how it could be? During age 17-25 I was anorectic and had all food related problems. I was afraid to eat too much and with height 1,80cm I weighted 59kg, what is very little for me as I have "massive bones" what is unusual for HMS people as well. I am massive and high, I am not bird-like person (as I always wanted to be like). Only my hands are thin and woman like, the rest of my body is boyish and I have never liked it. During anorexia time i lost my periods because there was lack of hormones which are responsible for proper cycle and periods (doctor explained me that I don't have any fat at all in my body, only bones and muscles. For that hormone to act, the fat in body is needed.) My mother worried a lot and used a little bit these hormones (I can't remember the name of them. It was before 10 years!). After that I never had such a periods as before (I had loads of blood before and my cycle was only 19-21 days). When I was about 23-25 cracking started in different parts of my body. It developed constantly and throughout my body. I didn't have pain but I started feel something wrong is going on and since than it's getting worse and worse. It means - cracking develops, for example during last 3 months my all spine is involved, i have to stretch it to get everything in right places. if I don't, it will be pain because joints are slightly out of place. The same about my shoulders. I never get them dislocated but all the joint (ligament) system throughout the body continues to weaken with every month and it will lead to dislocations.

Another topic which I have found here interesting is that trauma can case HMS. I can't understand how it's related to genetics. Do you understand? I had trauma in my knee when I was 15 (meniscus). I had arthroscopic surgery to remove small part of meniscus. After that my knees joints were weak but in spite of it I could run 3-10km a day, play tennis. Before 2 years I felt on icy road and hurted my upper spine - right side near ribs. Since that exactly right part of spine started get weaker, started to crack. Later it "occupied" left part of my body.

[Spireite]

Hi Baiba,

My hms symptoms didn't really start until I was 36. I was very stiff as a child - I was the furthest from being able to touch the toes. The older I get, the easier it gets. Also as I get older, the nearer I get to being able to do the splits - not that I am trying! I was very sporty. I have run marathons (and I do still run shorter distances). I think the key with us is that we are finely tuned and when one thing goes wrong, then everything goes wrong. When you are younger, your body can cope more easily, but as you get older than it accumulates too many problems and gives up. I did sprain my ankles a lot as a child but got on with it. Once your biomechanics go out, then it puts more strain on other biomechanics and it all goes. The trouble in our family is that we think we are normal and then you learn that you are not.

[annaL]

I think it is important to ask your Dr.'s to look into other things if you have NO other signs of HMS, there are other conditions that can cause muscles to weaken and joints to become loose especially as you describe yourself as having boyish in build.
That said you can find many people with HMS or EDS that find when they start asking family members about HMS type problems, they discover Aunties or cousins and other folk that had early arthritis or had to have operation on their knees etc. HMS is an odd condition in as much as it can be so diffrent in two family members even.

Anna

[Susan]

Hi...
I never knew about HMS till the end of 2008. I had my hips replaced at age 48 and then my knees replaced at age 52. 3 mos. after the first knee and a couple weeks before the second knee my hands began to hurt, then my elbows, then my shoulders. My toes were deviating to one side and getting painful with burning and tingling and spasms. My back began to ache. I was devestated because I believed I was going to be cured of weakness and pain by having the knees replaced. Instead I became totally disabled. I was terrified not knowing what was going on...I guessed maybe being on the walker for so many months (my recovery was so slow because of weakness). But then I checked with rheumatology and found out I had HMS or what she calls Benign Hypermobility Joint Syndrome. I kept after doctors...I went to 3 neurologists because I was so weak and they thought I had MS or some weird disease like Myasthenia Gravis but it was all ruled out. I take pain medicine 3 times daily and work with a pain management doctor. I had arm occupational therapy and lots of Physical therapy and I have it now to strengthen the muscles in the pelvic girdle area. I tried to work as a nurse after being off of work for a year (& subsequently fired) and chose home health nursing. I failed miserably. I could not get up and in and out of peoples furniture (chairs, sofas, couches etc.) I could not handle getting in and out of the car so many times a day and all the driving and lugging around a computer and nurse bag. They fired me after 3 mos. saying I was an excellent nurse but couldn't keep up with productivity standards. So I still felt like something was very wrong. MRI's showed severe arthritis in my neck and in my shoulders. I have severe stenosis in my back and arthritis is the cause. I went to a major University hospital and spoke with the Genetics doctors a few days ago. They took the history and did the exam. While my other doctors and Pt folks said my elbows both hyperextended - they agreed but said not beyond 10 degrees above normal. I did get the Beighton score of 4 for thumbs and pinky ... I do have arthralgia in my joints and in the end some of the other minor criteria. So on the phone they said today in there opinion I have Benign Joint Hypermobility Syndrome but not EDS type 3. I challenged them saying it's all one and the same! A milder form perhaps....but it's all the collagen, connective tissue thing! When I shared about local dental anesthetic doses having to be higher doses and more injections...and that I had heart trouble and was taken to a hospital by ambulance for getting too much perhaps...and that the local that was flooded into my knee replacement area to have me wake up rather comfortable...my body absorbed it so fast I woke up in screaming level 9 or 10 pain and it was hideous. The second knee they gave me a continuos running femoral block and I woke up much more comfortable. While on the table when the doc opened up my knee with the scalpel even with the block running and all the other general anesthetic going my vital signs jumped way up. This leading the doctor to say ' her body absorbs this medicine as fast as it's infused! ' --- The Genetic doctor I spoke with wasn't impressed. He said all that stuff hasn't been proven in research. As if that makes it not real? All things are anecdotal till research is done.......this does not negate it's occurence or importance in looking at the whole picture. As a kid I was flexible but not overly so. I was WEAK. Could never do a push-up or pull-up, or chinup or cartwheel. Same with my sister. So here I am with this diagnosis I guess rather firmly now since it's from a big deal place. But to be honest I had to fight for the diagnosis in an entirely frustrating year of a bazillion appointments to specialists to make sure there wasn't something else wrong. Some other reason why I'm in pain all the time in my body and so weak. As nothing's shown up.......HMS is it. Never knew it could be this debilitating. Never knew how ignorant doctors in the USA are about it and how it impacts patients lives. I have been teaching others for over a year about how it can present in life at different times for people in a variety of ways....one joint or many - on and off pain or constant - muscle weakness or not, at a youthful age or advanced age. So the bottom line thus far is physical therapy to strengthen the best I can. I'm told to use the pool. It's so freakin' frustrating that there are no HMS clinics in the USA. That we have only one Doctor -- Brad Tinkle that seems to care. There are no people in my huge state that seem to give a fat rats ass about this. I have had four major surgeries and scars healed quite well so again no EDS given to me. Yet these docs over here don't seem to want to admit that the patient knows more than them. I had to write a letter -- a very pointed letter with the Brighton Scale and my score per my impression because at first they thought I had hypermobile joints but not the syndrome......that was a crock of ____. After my letter they switched and said I understood wrong and that I do have HMS - just not EDS. WHATEVER! I love the docs for even listening and seeing me. They have been kind. All year the various doc's have been patient and puzzled as I was. So now we know at least this. Now it's time to try to find a job I can do.... because my disability carrier wants me to work of course....... :& cuz everyone needs to feel they are contributing to the world somehow in helpful work - for sanities sake if you are able. But I'm scared. I do not want to ever get fired again! I have been an excellent nurse for 25 years -- getting fired was a first! I am a cook by my other training. That might work except it's a lot of hours on your feet and with my pain I'm not sure I'd be able to do it. I'm willing to try though if someone will hire me. It might sound weird but I LOVE that I finally have a diagnosis from doctors my local clinicians respect. Then my life makes sense. I hate that it's not curable. My advice to anyone suffering through doctors not understanding or even yourself not sure ... is to be pro-active and communicate clearly -- in writing if necessary what's going on with you. If ligaments are buckling such as those in your back it's imperative to not carry extra weight as I do. So now I am obese and doing therapy and of course that makes it harder. It puts stress on the joints. Try to get as strong as you can to protect all your joints... You do not want to have joint replacement surgery ever -- you could end up worse off. Hopefully though it'll never come to that point. But I totally empathize with the feeling your body is being eaten alive by arthritis. To me it makes sense you have an underlying condition that is causing your symptoms......it may be HMS.

[Stone]

Baiba, I'd have a look at the Beighton and Brighton criteria on the main website and score yourself. If you don't have enough of the symptoms then by definition you don't have HMS. To me the way you've progressed sounds quite different to many of us here and the way you describe it makes me think there might be something else up - but then I'm not a doctor! There are lots of different conditions that are 'a bit like' HMS so I wouldn't want you to definitely think you have it and then miss out on a clue for something else because you're looking in the wrong place.

A friend suffered badly with after-effects from anorexia (including all sorts of weird things you wouldn't expect!) and it can affect many different body systems, so probably I'd investigate that side of things first. Whatever you do don't go out jumping at different solutions before you know what's wrong - you don't want to cure something you don't have! I hope you find the answers you're looking for.

Stone

[alaskastephanie]

Have a look on the main HMSA site, at the Beighton scoring method.
You score a point for each joint you can do it for. I didn't think I was Hypermobile either, as I thought this range of movement was ordinary, coz my Mum did it as well, and my kids do it, but yes we are all hypermobile.
4/9 counts as hypermobile, so if both little fingers and both thumbs do it, then your classed as hypermobile

Lou

Yeah, that's true and I s'pose the other pains I'm getting are Fibromyalgia related.

I was wondering, can you be hypermobile and not have any pains? Is there a difference between hypermobility and HMS? My mum and sister have bendy fingers, thumbs and wrists but don't suffer as badly as me.

Hiya-

My identical twin and I are both pretty bendy but I have all the joint pain. When yur bendy your joints, muscles, ligaments, catilage, bursas, tendons get used in ways they weren't designed to and you get pain. Even pain in ways you wouldn't expect. Nobody knows why some more than others and why some not at all. Like my twin and me.

[barkingmad]

Hi yes there is a most definite difference between being hypermobile and having hypermobility syndrome. Being hypermobile just means you are a bit flexible compared to the general population. But to have a diagnosis of HMS you need to be flexible/hypermobile plus have chronic pain and plus have chronic fatigue. This is a simplified explanation but it is easy to see where the difference between HMS and hypermobility lays.