Falling to pieces

[Helly Welly]

Hi everyone, this is a bit of a rant but there is a question here somewhere, bear with me.

Lately i feel like i've been falling to pieces. For years, my hypermobility syndrome has only affected my hips and i learnt to cope. It has got worse and now i'm in a wheelchair or mobility scooter a lot. Obviously, i have the fatigue, the IBS and all the other stuff. But lately a lot more of my joints have decided to join the party. Both my knees are loose and sore, as is my left elbow and left shoulder. My left wrist also likes to join in sometimes. I don't dislocate and have only subluxed twice in my life. My joints just feel really loose, like they can't take the weight of my body and they really hurt constantly. I wear so many supports i'm beginning to look like i'm wearing a body suit

Do you think i should get my GP to refer me to Prof Grahame or Prof Bird? I tried physio but that just made everything worse, especially my knees. I'm also not sure if my painkillers are working properly. I alternate tramadol and co-codamol every four hours but i'm still in some level of pain. I've learnt to cope with the pain and i think i've become used to the painkillers. Is there anything stronger than Tramadol? My GP knows very little about HMS, basically i'm teaching her, but she is willing to listen. I'm just not sure what to ask her. I just feel lost and broken but have no idea what to do about it.

Sorry for the long post but if anyone can help its you guys.

[Retro]

Hi Helly,

I think there are loads of posts very similar to yours, brain's gone for a wander so can't think what to search for

For medication, have a look in the medication specific section but remember you can only get general advice here, the best person to advise you on meds is your own doctor or pharmacist

Take care,

Lindsey

[ombili]

Helly Welly, yes, I do think that you should get a referral to Prof Grahame or Prof Bird or another specialist. It's not that they can "cure" you, but they can probably give you a better understanding of what's going on and help you to cope. Sometimes you just need another person - one whose opinion you trust - to explain things to you and help you figure out what you need to do.

I'm in a very similar situation, and I recently decided to get a referral to a specialist for just that reason. I know he can't cure me but at least he should understand what's going on and he might be able to help me figure out better ways to deal with my situation.

Good luck! I hope you'll find a way to feel better soon.

[Ames]

I'm new here so I'm sorry if I'm giving bad advice but could you try and find a physio that really knows about the condition? If you go to 'normal' physio they'll push you too hard, make you hurt, make you feel terrible...and you won't want to go back. If you could find a therapist who specialises and understands how gentle they need to be then you could start building your muscle tone very slowly, which will probably help. You might even be able to go and do hydrotherapy, which is really low impact.

I hope things start to get a little bit better for you....and your joints start to behave!!

Amy x

[Rosie]

Hi Helly Welly

Although I have an understanding GP there are noe rhuematologists or physios in my area who specialise in HMS. However, when I asked my GP for a referral to the physio, I was refferd for basic core stability, not for one particular joint. I lent the physio my copy of 'the book' and she took me through the type of core stability she gives for someone with back problems. She was prepared to listen to me, so when I said I couldn't do a particular exercise without it acausing more pain, she found another exercise instead. This is the only physio that I found useful for me, physio for particular joints has never helped me.



Rosie

[Helly Welly]

TBH, the physio exercises i was given were predominately core exercises and were seemed really gentle. I rarely had the energy to do them and when i did the hurt. I had some hydrotherapy but they wouldn't continue it if i wasn't doing physio during the week as it was pointless. I must say, i hated physio. I just felt exhausted and then guilty when i didn't do the exercises. Once i have a discounted leisure card i intend to go swimming and do the hydrotherapy exercises i learnt myself.

Is it worth a referall to Prof Grahame to get a more formal diagnosis? Would he have any other suggestions? Would a letter from him help with any future DLA applications? I don't currently receive DLA, even though i barely walk anywhere.

Are there stronger painkillers than Tramadol? Am i going to end up addicted to painkillers??

[Eloise]

You don't get addicted to pain killers as such when using them for pain. But you can get tolerance to their effect with continued use. "Stonger" and "weaker" are bad words to use in describing painkillers, as it is very individual. What works in one person doesn't in another, and what causes massive side-effects in someone doesn't cause any problems for another - I no real way of telling which is which. There is alot of information in the medication threads.

Tramadol is classed as a weak opioid similar to codeine. Probably a 50:50 chance whether you will find it better or worse than codeine. ON average however, more people have side-effects with tramadol, including fuzzy heads etc. Taking any weak opioid (codeine or tramadol) at the same time as paracetamol enhances its affect to more than the sum of the individual drugs.

You say you alternate co-codamol and tramadol? Any particular reason? Co-codamol has paracetamol and codiene. It may be best to discuss this with yout GP or Pharmacist, as you may be better with regular paracetamol topped up with either codeine or tramadol for when the pain is bad. Thereby minimizing the side-effects of the weak opioid while maximizing the pain relieving effect. (So would be best for you to find out which out of codiene and tramadol gives you the more pain relief with the less side effects).

There are also NSAIDs which can be added to paracetamol and weak opioids - but these have side-effects and many people can't tolerate. Sometimes low dose anti-depressants are used for their affect at modifying nerve pain and their ability to enhance other pain killers (read the amitriptylline and dosulepin threads). The next stage is then replacing the weak opioid with a strong opioid such as morphine, fentanyl, butrans etc - but this is also a step up in side-effects and needs to be considered carefully.

Hope my waffle makes sense. Have a read through the tramadol thread and the other medication threads, and feel free to send me a PM if you want some extra pharmacist advice (Dosages can't be mentioned with the boards)

I would definitely ask for a referral to one of the specialists for a definite diagnosis. It doesn't mean anything can be done - but knowing that you are fully believed is a great help for your mental state Also, the physio and OTs at these centres can sometimes be more helpful that local ones that don't really know much. (My local physio gave me core-stability exercises well above what I was capable of - so I was over using superfical muscles and not getting any benifit).

As for DLA - I have chickened out of applying - so I am sure others would be best to advise.

[cuddles]

helly welly
if you ever want a chat on the phone let me know and i will give you my numbers
i am not trained in giving support etc ,BUT i care and i am a gooooooooooooood listener

take care
cuddles xxxxxxxxxxx

[dawn barlow]

Hi Helly Welly,
I think it would be worth you getting the referral. You would probably find the physio they give you more useful than the local hospital that doesn't really know very much about the condition. Jordan started physio again a few weeks ago at the local one for his shoulders and they have already discharged him saying there is nothing more they can do and that they don't think even exercise is going to help. You don't get fobbed off with Prof. Graham.

Dawn

[lillymabel]

Helly welly, sending you very gentle .

I imagine life is tough and exercise is probably incredibly difficult but I would just like to say that one of my hugest bug bears all my adult life has been my knees. They were the first things to gve me grief and almost all the rest of my joints have followed. Now 20 years ago I saw a consultant about my knees and he offered me op's etc. But he said that if I could tighten my quad muscles then it would help stabilise them and hopefully reduce the pain. Well, at times it was very hard then I realised that if you don't bend them past a certain point the pain is bearable. I'm presuming your hips are painful too? But it really worked wonders for my knees. I really don't mean to make it sound too simplistic and please don't get frustrated by my post - I do understand but to cut it short - although my knees hurt and probably always will I can get on with stuff much better. I even run (on a treadmill) as it doesn't seem to be weight bearing most of the time its more how low I go and i use an elliptical (like cycling standing up! I really recommend this machine they are fab, low impact and I suppose you bend you knee less than if you were cycling also you have handles that you have to hold on to that gives you a bit of an upper body work out too togetherwith improving coordination and stabilising you) and my quads aren't perfect but it all helps. I'll never be able to get on my hands and knees and scrub my kitchen floor (oh what a shame) or go upstairs painfree but I have improved. Sometimes exercising is the last thing I want to do but I KNOW I feel better for it. Truly.

Sorry I know its a long post but I would like to add that in my younger days when they were bad, the sunbeds (!) helped. Obviously you were on them for 30 mins and it was d**n hot but it helped. Haven't been on one for years but actually I might let you know if it still works as my joints in my upper body are no good lately. Watch this space .

Don't get too down, thinking of you.

[barkingmad]

Hi Helly
Sounds like you are having a really rough time. i would ask for the referral to one of the specialists, i found prof.g really great and his advice and validation was truly helpful. It sound to me like you should def be applying for dla and a report from prof g would help there too.
I dont have anything helpful to say about your meds, but I think Eloise explained everything really well (I'd send her a PM!). I do know that prof G told me that sometimes for some reason we can develop some kind of tolerance to our meds and they dont appear to work for us...whether that is due to chronic pain syndrome I'm not sure (still foggy Gila!!! ). Having said that other people have told me that sometimes by alternating their meds they remain effective for longer. i personally think that as we are all individuals, that what works for one person isn't guaranteed to work for another etc
I didnt get on with my last physio very well either, what she wanted me to do exacerbated my pain etc...but I have started swimming! Admittedly, I re-injured my elbow doing it and I did too much and have sufferred increased pain and fatigue...(which is very annoying as I keep falling asleep whilst trying to watch tennis !! ).
To be honest i was told it would be too tiring but you seem so much more sensible than me and as you are planning to do your hydo exercises i am sure it might help. Is anyone going with you?
regards donna