Drugs?

[LaurenBurton]

Hi everyone I know it's an extremely personal question but I was wondering what medications you take to deal with all the lovely symptoms that EDS brings? Especially the pain? Because I've been on 30/500 co-codamol for 2 years and I still get the drowsy side effects (doesn't really help the fatigue) but it does nothing for my shoulders pain. P.S I feel it's only fair to say I haven't been officially diagnosed as having EDS yet, just hypermobility. Thanks x

[Jay66]

Your diagnosis is not really relevant: pain is pain. If it interferes with your daily living then it needs to be dealt with.

I take Tramadol 100mg slow release every morning, topped up with paracetamol. Dependent on the day (like today I suspect - everything hurts and aches) if I am still in too much pain to get up and do something by 11/12, I take another Tramadol. I can take up to 4 max per day but now that I don't work, I don't often do that. It takes an hour to begin to work, so if I need to go somewhere or do something, I have to get up a couple of hours in advance in order to take the tramadol and assess how effective it is being that day. It does make your body dependent, and I personally could not skip a day. Others find that tramadol has no or little effect; most of the people I know could not function on it. I took it for a week before trying to drive or work on it. It makes me sleep well.

My GP has given me a permanent offer of steroid injections if I develop strong and intractable pain in my large joints.

On prescription I have some fibre stuff now and again to deal with the constipation and stoppages that both hEDS and the Tramadol bring. I also have strong eye drops to deal with the occasional dry eyes you can also get - pretty sure it is linked to hEDS/HCD. Most of my prescription meds (4 of them) are in fact to deal with my high blood pressure, which is a strong family trait. I currently take nothing for my diabetes.

Forgot to add: originally I was given Naproxen too, with a proton pump inhibitor, but the PPI was ineffective and my stomach reacted too strongly to the Naproxen, so now I avoid all NSAIDs. It is a genetic thing.

[LaurenBurton in reply to Jay66]

Thanks! I actually had a tramadol pill left from when I had this awful pain in my side that they thought was gallstones, went to hospital at 1am for an appointment and a tramadol injection and then got a prescription for pills, still don't know what it was actually, the pain went away after a week or so but it was agony! I took that 2 days ago when the shoulder pain got too much and the codeine and paracetamol wasn't touching it. It worked for 2 hours then the pain came back. Probably worth asking the rheumatologist about it next month. My own GP won't even entertain the idea of giving me anything else (even when I had a car crash and the chest pain caused by the seat belt kept me in bed for 2 weeks) because of how strong the cocodamol is. They just see a 21 year old girl rather than a diagnosis but I'll definitely ask about all of that! Thank you xx

[Jay66 in reply to LaurenBurton]

If you need them then you need them - a GP should not deny it. They are stronger than cocodamol, but are for chronic pain and will not do much for acute pain.

[LaurenBurton in reply to Jay66]

I know but my doctors suck! I recently swapped anxiety meds and they gave me 2 weeks and told me to get an appointment for a review. Nearest 1 3 weeks away so I had to call the reception and ask them to ask a doctor to order another weeks worth to see me through, had to pay another £8.60 prescription fee. Then I get a letter yesterday telling me my appointment on the 12th is cancelled due to unforeseen circumstances! And that I have to call and arrange another appointment! Got the letter yesterday so my doctors were closed! They should have given me an alternative that I could then have rescheduled if need be but to just cancel it is shit especially as I now have to get more meds ordered before I can have a doctor let me know if I can continue and they're working. They're not tbh. I feel the same. Might be the neurological problems that I've read can happen with EDS so I have no idea :/ yeah I've been on some form of painkillers for 9 years. 2 years prescription strength and half a year of not working anymore!

[Jay66 in reply to LaurenBurton]

I am terribly sorry that this has happened to you.

1. Buy a one year prescription from the NHS, called a 'prescription prepayment certificate (PPC)', It costs £104 per year, so will save you money if you have more than 2 prescriptions to fill per month. I have 5 per month plus 3/4 per year, so it is a massive saving for me.

2. Insist that your GP takes your pain seriously. Your pain means nothing to them unless and until you make them aware that it is ruining your life. Unlike the USA, there are no reasons why you should not be given opioids. Be aware they are addictive, but will help with pain relief.

[pikamonster]

I actually can't take pain killers unless it's an emergency (like my annual kidney stone) as I have non-alcoholic liver disease and periodically reduced kidney function (result of those kidney stones). I tend to aim to reduce dislocated joints as quickly as possible and use hot patches, KT tape and massage to manage any after-pain instead. The only time I really take painkillers for the EDS symptoms is when I dislocate a rib - they let me take codeine for that because otherwise it wreaks havoc on my systemic issues and is fairly debilitating.

[pikamonster in reply to pikamonster]

Forgot to mention the other prescriptions - ivabradine for heart, midodrine for blood pressure, cetirizine for MCAS, vitamin D for chronic deficiency, pantoprazole for GORD and ondansetron for vomiting.

[LaurenBurton in reply to pikamonster]

Wow you sound really strong! Managing EDS pain without drugs seems uncommon from the research I've done so far! I have a chronic vitamin D deficiency too! That's what I put the brain fog down to but even with daily supplements, it hasn't improved.

[pikamonster in reply to LaurenBurton]

That's really kind of you to say but I'm not that strong I don't think, I think the pain can vary and I've gotten quite lucky with it, plus my boyfriend has gotten really good to putting dislocated joints back so they're never out for long which makes such a difference in terms of ongoing pain.

Also I've tried to adapt everything to help, which was a bit annoying at first but once I got into the swing of things t became second nature and really helped. I use a walking stick and when I don't I get much more pain through my legs, and I switch arms regularly to stop it fatiguing my arms (unless I need it on one side due to a subluxing patella or dodgy ankle at any particular time). I also wear shoes with a slight heel which has massively reduced patella issues, as my Physio explained it stops your knees from hyperextending, and I always sit in high backed chairs and when I don't I get quite obvious onset of 'coat hanger' pain. I got a memory foam mattress which massively brought down overnight dislocations/subluxations and also found a v-pillow can help in supporting the neck and shoulders overnight. At work I have a split keyboard and mouse rest and that has really helped my wrists and fingers. I bought a steamer for clothes so I don't have to hunch over ironing and cut my hair shorter and more regularly to reduce styling/washing fatigue. And I split showers into hair and body and take a break between. Lots of these are trial and error but I'm definitely in a way better place than when I was first diagnosed - the actual dislocations are much more manageable if you have the other symptoms under control, like for me the POTS and MCAS turned out to be causing the most problems, and though I still have bad flare-ups most days are good rather than bad.

With the vitamin D I found it took quite a few months to work, and my GP said that's usually the case. The brain fog for me was really helped by controlling my heart and mast cell conditions. Also I recently found out vitamin D can be bought over the counter and often way cheaper than on prescription, so that helps with the financial burden a bit. Also I ask my GP to prescribe three months at a time which makes a big difference on prescription costs.

It's definitely not easy and I really hope you get some relief from the pain soon but I also want you to be reassured that there are things that can help and a lot of them doctors don't always suggest because they don't really know. I was lucky to be referred for social care (reablement) by my GP so I got told about a lot of adaptations which can help, as did the OTs at Stanmore, but I actually came off both because I felt I just needed the initial advice and was happier to have local check-ins with occupational therapy and work the rest out based on what helped me at any particular time. I was literally in hospital every day of the week for almost a year at the start and took an extra year to complete my degree due to surgery but now I just have a handful of annual appointments, a Physio and OT who see me as needed and am managing to work full time with some days working from home and flexible hours for when it's worse.

Do what works for you and don't ever feel sorry for needing some help. You'll discover what works best and then you'll be living better than you ever realised you could. If you need any help with appointments or advice with anything feel free to message me.

[Country4eva]

I have an issue of not being an adequate metabolizer. My md gave me a dna test that showed I have poor metabolism so what it takes to stop pain for some takes double for me and let me tell you I pay hell at hospitals and drs for this. They think im a druggie. I have been made to feel ashamed for even being on pain meds and now the government has made it taboo but in some states they can mail cbd oil too u. I do not get this double standard. Cbd oil is an awesome alternative but because I live in a state where its legal but see drs that are in a state where it is illegal, i cant use it due to the thc though very minimal in cbd oil, will show up in my urine . For anyone who wants to know about cbd oil go to roc.us which stands for realm of caring. They have studies, newsletters, dosing charts, etc to inform u of its use for pain and many other things it treats. Also cwhemp.com sales the most potent cbd oil in the usa. I have tried it and it works. Now how to figure out how to use it deing with two different states. This government game playing with peoples lives is redic.