By becky on Thursday, February 28, 2002 - 05:26 am:

Please someone I need your help. I am 16 years old and I have had HMS in all my joints for a little over three years, and my pain is getting gradually worse. My doctor didn’t advise any medication or drugs I could take to help my suffering, so until now I have just about survived without, but I can’t cope with the amount of pain I am in any more. I was wondering if any of you had tried any pain medication that has helped to control your condition? I have tried normal pain killers such as ibuprofen and paracetamol (I’m not sure about the spelling for either), but I seem to be immune to their effects as they don’t lessen my suffering in the slightest. I really need some advice on which drugs could possibly help, I am willing to try anything.

Thank you so much,

Becky

By Margareth on Thursday, February 28, 2002 - 07:27 am:

Tramadol also called tramal or ultram works for me. It takes the sharp edges of the pain. It is not an NSAID like ibuprofen, naproxen, vioxx etc. It is (like) an opiate (don't know if I spelled it alright, but you get the idea).
It works for me, but it is heavy medication. I get a lot of side effects, especially when I first took them, and I can really feel I am drugged.

By Becky on Thursday, February 28, 2002 - 10:18 am:

thank you so so much for replying, i am really desperate for help.

i have read that NSAID's are bad for you, is this actually the case? also what sort of side effects do you get with taking tramadol? i understand that everone suffers differently, so what helps one person may infact not help another at all, but i will try anything....

thank you again....

becky

By bree on Thursday, February 28, 2002 - 06:25 pm:

Hi Becky,
I certainly know how it feels to be 'desperate for help' and ready to 'try anything'. Seems to be the story of my life these days. My doctors also didn't recommend any painkillers when I first got HMS, but like you I found NSAIDS, paracetamol, etc. did nothing. I have no idea if NSAIDS are bad for you or not, but most HMS suffers I've talked to say they don't work for HMS at all. Lots of us seem to be 'immune to them'. I take tramadol, like Margareth, and find it is one of the few things that helps. I also take codiene, but this works only for headaches not for joint pain. I've had no noticable side-effects from either. But I have read that some people have huge side-effects from tramadol - feeling high, hallucinating, etc. As you say, everyone is different. The thing I've noticed is that I have to keep upping my dose of tramadol every few months, which is annoying and expensive. But I just haven't found anything that works even a little bit. It'll be interesting to see if anyone responds to your post with some new ideas.

By 1brittany on Friday, March 01, 2002 - 02:54 pm:

I have went to Celebrex, Ultracet(Ultram with Tylenol), and a time release morphine. That is what has kept me going to far. Every so often I have to switch as my body seems to get used to them.

hugs
Beth

By margareth on Sunday, March 03, 2002 - 09:28 am:

NSAID's can destroy your stomac especially when you use them for a long time... Paracetamol does not have these side effects and taken in combination with coffeine it works just as good as most NSAID's, as a painkiller, not as a anti-inflamatory. But since the NSAID's don't do much for me, neither does paracatamol with coffeine. The side-effects I got using Tramadol? read my post at http://marge.com/hypermobility/messages/37/189.html?ThursdayApril2620010337am#POST3245
I posted for several days when first using Tramadol. Now I don't have these side-effects anymore. The tramadol doesn't work as good as when I first took it anymore but I still feel a lot worse when I forget to take one. If you take Tramadol try to get retard-capsules, they last longer, so you only have to take a dose every 12 hours. I take 100mg twice a day. I would like to take more but I am scared because of the side-effects. Like I said, I tried almost every NSAID there is and I tried Paracetamol, paracetamol+coffeine, Codeine, Paracetamol+codeine, only Tramadol works a bit...
Good luck!

By Becky on Saturday, March 09, 2002 - 10:26 am:

thank you all three of you for all your advice and help. since posting i've found out some information on the drugs you posted about, and i had an appointment with my doctor to talk to her about them. unfortunately she doesnt know enough about my condition to prescribe me any! i'm trying to find someone who knows about HMS at the moment, hopefully i will find someone soon. thank you again.... and good luck to you all too!

By Silvia on Wednesday, March 13, 2002 - 06:39 am:

Hi Becky,

I understand your desperation. I also have hypermobility syndrome and have taken pain killers such as Ultram and Oxycontin. I really prefer not to put any chemicals in my body and therefore stopped taking these a while back ago. One thing that has helped me very much with the pain is prolotherapy. Unfortunately my prolo doctor was giving me anesthesia along with the treatments, and some of the drugs he used with the aneshtesia have caused me some serious neurological problems. If you ever look into prolotherapy please try to avoid aneshtesia. My doctor didn't give me an option or warn me about the drugs he was using. And I wasn't aware of how much harm they can cause. The drugs that harmed me are Compazine and Phenergan, they are anti-nausea medications and he used them to prevent nausea from the anesthesia. I just found out about this recently and therefore have decided not to see him again. But I still want to continue with the prolotherapy since it has really helped me, I'm intending to see another doctor, and he doesn't use anesthesia.

This is also a reason why I'm against putting any chemicals in my body. The new doctor I'm intending to see said that people with connective tissue disorders tend to be more allergic to medications.

By the way, other things I have done for pain relief are:

taking hot baths/showers (I have a detachable showerhead with massage features, it really helps relax my muscles. If you live in the states you can get one at any home improvement store or wal-mart, target, etc.)

I also use a heating pad. Mine came with a thin sponge for use with moist heat. I have found that the moist heat helps me more.

Meditation has also helped me, especially to deal with the stress that accompanies pain. I use a meditation tape by Bernie Siegel and it really helps me relax.

I also enjoy listening to classical music. One morning I woke up with lots of pain and stress and
tuned to some classical music and was amazed at how much it relaxed me after listening for about 15 minutes.

Some people also find relief from using creams. My physical therapist had some called sombra. I used it and it helped, but I'm just not crazy about that hot burning feeling I initially get when I use creams. Therefore I don't use them a lot, but that's just me.

Anyhow, hope this helps.

By Margareth on Friday, March 15, 2002 - 05:04 pm:

Yesterday I was out of tramadol. I didn't take it for like 24hrs. In the end I was in SO MUCH pain. It most really work this painkiller. If only it wouldn't make me feel so drugged all the time...

By Kim on Saturday, March 16, 2002 - 10:59 am:

Becky,
I was diagnosed with EDS at just about your age some sixteen years ago. First thing is you need to find a specialist who knows and has treated people with your particular disease. How else will they know what to do. You need someone you can trust that has your best interests at heart. As you get older your disease will progress so getting with a Dr. now is important so they will have past medical history to compare what has or hasnt worked for you in the past. Trust me, Drs. will put you through the mill if you let them. Dont be afraid to tell them how your feel. You are the one living inside your body, you are the best judge. Drs. are not GODS as much as they might disagree.. Follow your gut instinct like you would with anything else. If it feels wrong it usually is Best, Kim

By Becky on Sunday, March 17, 2002 - 12:07 pm:

hey again all!

i've heard about prolotherapy, but i'm not sure if it is available in england where i live, and also what exactly it is.

i saw another consultant since my last post, and he also doesnt know anything about HMS, so now i've been refered again to see a rhumatologist who will hopefully be of more use. it seems that no doctor really knows what it is so they just keep telling me to go elsewhere! i also find that because i'm only 16 the doctors tend to talk to my parents about it more than me, which i find really frustrating!!

is tramadol available in the uk? i've read so many good reports on it that it sounds like there is quite a good chance of it working.

thank you again, becky xxx

By Ian on Monday, March 18, 2002 - 11:27 am:

Becky

Again, a message that shows how the "medical profession" fails those with HMS/EDS. You just have to find someone who knows about the problem and listens to you. I can not help with a recommendation as I am in New Zealand.

I have no wish to get in between you and your parents BUT, it is your body and you are not a baby and you have the right to talk with a specialist and ask questions of that person. Do not take no or a "fob off" for an answer.

You can use any search engine to look up what prolotherapy is and you can look up these boards for other experiences with this.

Remember one thing - the person who really cares about you is the one you see looking back when you are sitting in front of a mirror. Be assertive, stay positive, and do not give up.

Regards from Ian (mercedes_nz@yahoo.com)

By bree on Tuesday, March 19, 2002 - 09:22 pm:

Hi Becky,
Like most of the people who post here, I've also had more than my fair share of doctors who "fob me off". Even a few who say they haven't heard of HMS, therefore it doesn't exist! As for these doctors that assume a 16 year-old can't make their own descisions about their body ... just another example of 'doctor's logic' that makes me want to scream. Like Ian, I don't know what your relationship with your parents is, and don't want to get in the way. But if I was in your shoes I'd talk to my mum about it. I'd ask for her help with this thing where doctors talk about you not to you. Maybe she could say something like "well, it's my daughter who'll need to know about that", or "it's my daughter who'll decide about that" or something. Make it clear whose body is in question. Again, it depends on your situation, which only you know. Also, I found a "Hypermobility Association" website recently which is based in the UK - www.hypermobility.org/index.shtml. They listed some UK hospitals and rheumatologists that specialise in HMS. Maybe they could recommend somebody near you?

By Kati Schroeder on Thursday, March 21, 2002 - 12:54 am:

Hey everyone!

I know that not everyone finds oxycontin helpful, but it is the best I have found so far for the pain. I, too, am quite aware and concerned about all of the chemicals and toxins I put into my body, but even if I am an hour late with my dose the pain becomes unbearable. I've found that meditation, relaxation, visualization, breathing exercises, hot packs,TENS and other things are somewhat helpful, but unfortunately I am unable to control the pain with these tools alone. Oxycontin is a slow release opiod that generally lasts about 12 hours. Most people take two a day, but doses vary slightly from person to person. (I'm no expert, but I've been told this is how it is normally taken). Also, to those of you who are already on oxycontin and are finding that it is only lasting about 8 hours, I was told that some people metabolize it faster and therefor have to take it three times a day (I am obviously one of those people). Just a hint in case you're finding it is not lasting as long as it should. Different people obviously react differently to the same dose of it - for example I get the normal drugged feeling with slight memory loss, sleepiness, and dizziness, while other people who are on a higer dose have none of these reactions. Out of vicodin, percacet, naperson (sp? similar to naproxen), vioxx, codine, and everything that is sold over the counter, oxycontin has helped control the pain the most. Also, my acupuncturist recommened that I take milk thistle tablets with my meds becasue it helps your liver deal with all of the toxins from the meds and it also helps them work better. In addition, if you are getting a simple reaction like itching from an opiod try the milk thistle too - it worked for me.

Best of luck - Kati

By Becky on Saturday, March 23, 2002 - 12:12 pm:

thank you once again! everyone who posts here knows so much!!

the thing with the doctors talking to my mum and not me is that they actually sent me out of the room so that they could discus the issue of my joints without me in the room. and they both seemed perfectly happy doing that...

hopefully my newest doctor will be able to give me advice on those painkillers that would be most suitable, but i will mention all those that you guys have mentioned on here... cuz if they work for other HMS/HEDS sufferers there is a greater chance they will also work with me. and i wont be bringing my mum in with me this time!!

best wishes, becky xxx

By Bianca on Saturday, April 13, 2002 - 08:01 am:

Learing about pharmacology (I study nursing science) I read some very interesting sentences about NSAIDs in general.
"Although it is not understood scientifically there are some non responders on NSAIDS and you should try another when you don't have pain release on one" (Carruthers, G.S., Hoffman, B.B., Melmon, K.L. & Nierenberg, D. W.: Melmon and Morelli's Clincal Pharmacology Fourth Edition p.1009- 1021). For me it was so great a feeling to read this because it told me what I always felt but nobody seemed to belive me.
I also have no effect of indomethacin which I know should be one of the most potent NSAIDs. But I have good release on Cox2 inhibitors (Celebrex/ Vioxx) and Opiates like Tramadol.