So I'm on 30/500 2 pills a day 4x a day. I have EDS, instability of lower limbs, a joint deformity in my hip and a labral tear in the same hip along with chronic spine pain in the entire length of my spine and gastroparesis so I hurt all the time. *fun*
Been on cocodamol for maybe 2 years now, before that was naproxen and before tramadol but they didn't work either. My pain is getting worse as the weather changes and I'm at the point I don't leave home or even my bedroom most days because I'm in so much pain. Sometimes Drs are like oh you're under this and that doctor wait until you visit them again but they aren't hearing me when I say that doc has said speak to the GP because the GP deal with me more so they don't wanna prescribe me something and I don't see them for another 6 months and if the GP changes it then they can't make any headway on how my treatment is going, so let the GP and myself discuss together contact the specialists let them know and at least if I have to change meds it's via my own dr and I'm not left waiting ages to see a consultant again.
I'm going to see a GP on the 6th December but I get the feeling I'm going to be fobbed off again, there's been times they're like oh let's lower your dose to LESS THAN HALF of what it is and see how you get on -.- one doc was like how about some paracetamol? Yeah I tried that from 2009-12 it didn't work why do you think I was given stronger pain relief? Is there any recommendations anyone can make that I can speak with my dr about? Fed up of everything hurting all the time! I'm 21 and just want to live a normal-ish life where I'm not aching all the time or unable to do things for myself because I'm in so much pain. I can't even shower standing anymore, I can only go up like 3-4 steps before my legs are in pain, even typing this now my arm is killing.
I have hospital letters that speak about chronic severe pain in all joints, to avoid standing for long and other things that exacerbate my symptoms. But because docs see "oh she's of a good weight and doesn't look sick she's feeling fine" no I'm not feeling fine, my concealer is working wonders and I have to force myself to get errands done soon as so I'm not stuck in public curled up I a ball when the pain train hits me out of nowhere -.-
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TianneD28
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My view is that because you are only 21, with a long life ahead of you, giving you stronger (and ever stronger) pain meds, will leave you with ever decreasing options.
If you were 61, decisions are generally easier for health professionals to make.
It's great to be 21, provided you don't have difficult health issues.
There are meds out there that do help, but who is going to take the rap in future for possible undesirable consequences. Patients are not given the right to choose (generally).
None of this helps your situation I'm afraid, there is a political dynamic and you are slap bang in the middle of it. I am not aware of any disclaimer to get the pro's off the hook.
Apologies for skirting the issue but you are probably quite used to it by now.
Things will improve, they usually do, it's just the answer hasn't shown itself yet.
I know exactly where you are coming from Im on naproxen , gabapenthen and morphine and I'm still in pain . I'm seeing a pain specialist on the 6th December but don't hold much hope as I've seen one before and it didn't make any difference . I had a bursa and a lateral tear on the flesh next to my hip joint and a torn cartledge . now diagnosed with CRPS after my surgery . my consultant said he wished he had not done my first surgery theta didn't help me . just feel let down x
So sorry to hear of the pain. Hope things ain't too bad today. I was on Co-codamol for 6 yrs. They stopped touching the surface. I have to force myself to get up and go. I have chronic arthritis in my feet, ankles and knee.
The doc and I had a chat and she diagnosed Tramadol 100mg, 4 a day along with Neproxin.
It doesn't take the pain away fully but certainly helps to take the worst of.
The side effects I've noticed are a very dry mouth and drowsy.
I so wish that you find the answer soon....Take Care
Tramadol is stronger than cocodamol so would come after in the pain meds ladder.
You are very young. No GP or consultant wants to start you on stronger meds as there will be nothing to help you in later on
Have you seen a pain consultant? They are the ones who deal with you as a whole. They teach you pacing, coping and in general managing your pain. They will suggest pain relief meds which your GP will then prescribe, Physio and alternative therapy can also be offered.
Thanks for tip about the pain consultant I'm seeing my doctor today I will ask as I have pretty much the same as Tianne and don't know what else to do they keep fobbing me off
Just remembered. If you have time before you go keep a pain diary. When it hurts and what number...1 - 10., What you had been doing even if just shuffling in a chair. Many consultants appreciate something written down rather than you say it hurts when I move etc.
They thought David had bursitis but when they discussed his pain diary it became clear his hip had worn out. Replacement done.
Am back after being offline for a few months. Reading about the 21 yr old already in such pain, and can understand why drs dont want to start on strong pain relief. I am in my mid 70's and have been on pain relief meds for 30 yrs plus. And now - nothing works for me and 2 months ago I was taken off the Pain Clinic's register as the consultant was of the opinion that the sacro joint injections I have been having for the past 8 years werent working! i was dismissed there and then. It only took him 10 mins to reach this decision which in hindsight did it to reduce the number of patients. And now I am taking nothing cos my dr said nothing would help anymore....do I take his word for it. As I am getting older (arent we all), the pain worsens so the time of my life I need pain relief it has come to a full stop. Any advice would be very welcome and helpful
I totally sympathise as I have pretty much the same I long to be pain free but everyday I get up and think here we go again My hip affects my lower back thigh and knees I can't walk for longer than a few minutes The Co codomol does nothing I'm in the middle of pyhsio but some days it's too painful to do that Im sorry I'm not helping but when I read your post I thought that's my story too They keep telling me it will get better but I wish I knew when
I completely get where your coming from. After my last change round and increase of medication that is doing nothing for the pain but giving me unpleasant side effects , I was in tears the last time I saw my GP, the choice it seems is limited, have stronger medication, more side effects and hope that works but then at the same time you can't do anything anyway because the the side effects are so bad, my GP's response was to agree, keep taking the medication I'm on - going back to see him this morning.
Good luck with your appointment on the 6th, I really hope they find something that can help you with your pain
Do you know about Dr. Francomono’s (she is an EDS specialist in America) 75% Plan for Pain Relief. "Take, for instance that your medications take care of 20% of your pain relief. Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And then you watch a great movie for another 15% of pain relief. So now you have 75% of your pain managed effectively. How would your days be different if 75% of your pain was gone? Dr. Francomono’s plan demonstrates the importance of using multiple strategies…even if each one only makes a tiny difference, the difference made when they all are added together is significant.”
As others have said, as you are young there will be a different response than if you were at the end of life. A referral to a pain clinic would be a good start.
They have found that if low dose opioids aren't working then higher doses are not likely to work either. Did you see the documentary The Doctor that Gave Up Drugs? They took someone off all their medication but told them they were going to taper it down. The women was convinced that she could tell which days she was taking real drugs and which were placebo by the levels of pain she was having. She was surprised when they told her that all of them were placebo! When she realised that her pain levels weren't related to the drugs, she gave them all up and started using other methods of pain control.
It sounds like this is the sort of thing you need to look at.
Morning everyone snd thanks for your responses, tramadol never helped me pain wise and I ended up having small fits because of it and this was when I was 14 they had prescribed it to me. Last night I was in so much pain I didn't sleep til 3am I had loads of pillows, took more pain killers, had my tens machine and still found it hard to shut the pain out and have some sleep so only only just woken up :/ I'm under Stanmore rnoh pain rehab but they can't actually prescribe things, they can't even do scans they can just show you how to cope from the point that you're currently at :/
You are going to have to look for help from other sources than the medical. You may have a muscular control problem. If this is the case then you need help from people who do hands on work with muscles. Such people would be Alexander Teachers, massage experts, Sports therapists, Yoga teachers, martial art teachers, chiropractors.
To find the appropriate expert in your local area you are going to need to network with people to find out who helped them.
I've seen Physios, OT's, Osteopaths, Chirocpractors, hypermobility consultants, ankle surgeons, hip surgeons, pain consultants and they've ruled out muscular disease. Just EDS type 3 with a Marfan cross over, gastroparesis, ibs, asthma, instability of the lower limbs, femoral deformity and internal rotation of the right femur, no tibial torsion and they can't see major spine problems that would cause my pain so for now it's a pin it to the EDS game
Thanks for the reply. I was not talking about muscular disease. I was talking about muscular control problems. This is a problem that many adults have.
Muscles are controlled by both the spine and the brain. Sometimes the feedback loops of muscular control can go wrong. This can happen in any one. When this has happened, It is becomes important to relearn how to move efficiently and effectively again.
Not sure if you have understood what I am trying to say.
I get what you mean, I've seen lots of doctors who have said some of my problems could be muscular because of EDS but when I was being seen by different professionals they said there is some weakness in some muscles but most of my pain comes from bone injuries or deformities and nerve damage
Hello, sorry to hear of pain ruling your life in one so young. Several of the comments on here are good to read even as a longer term person 'managing' chronic pain from many angles.
For me, it sounds like one thing that could be of help to you is a regular GP to help you navigate health system/s and one that listens.
I live in a regional area and only really have my GP to guide me. If your not functioning, be honest about it and let the GP know how your feeling. A good GP is part of what has made the difference of me not being possibly headed in a wheelchair, even where I have not had and cannot get any regular access to specialist services. A good GP with whom you have put in the work on your end to build a relationship and be honest will not just give you medication or pretend operation will always be answer and a reason to wait. It sounds like your pain is completely out of control at present. I hope you can find a way through it to reclaim some of your life. Good luck.
My regular GP has left ;( she knew all about EDS and how to manage it so now I'm stuck with the other airheads who can't pronounce my name after 20 years of being at their practice
I to am on cocodamol and like yourself and others it doesn't help. But what I do is tell my doctor I want to try tramadol for a while and doing that sometimes helps me. Also voltarol cream works for me, so maybe you could give that a try.
Last time I had it when I was 14 (2009) it didn't help me for pain but gave me small fits so I don't even know if that will help me now or be any different. When I'm in hospital they always give me fentanyl or morphine, morphine helps lots whereas fentanyl has me higher than a kite and my eyes open but snoring and one side of my face melting almost like how someone who has a had a stroke would be, I literally can't move one side of my face and I'll start drooling and then doze off eventually because to me I've blinked once but during that blink I've fell asleep for maybe 3hr 😂
Oh you poor, poor darling. I know exactly how you feel. I was told December 2015 by a pain consultant that I was not distressed enough or in enough pain for surgery. Unfortunately at the time I needed surgery badly but because so much time was wasted it was not successful and now I am facing a triple level spinal fusion in January. I also have HEDS and yes we do look well and we look younger also, it's due to an excess of collegan in our systems. Buy boy do we pay a huge price in nearly every other way.
Now your pain control history is similiar to my own, 30/500mg 2x3times per day, previously also Tramadol. At the end of August I had a particularly bad period my GP put me on BuTrans patches 5mg first and the 10 mg patches. Each patch lasts 4 - 7 days. If I get breakthrough pain I may take 1 x 30/500 solpodal (soluble) I find this gets into the system better and at really over the top times I will add 1 paracetamol to the solpodal. Also I have found some temporary relief from lidocaine patches, these are called Versatis 5%. Remember Tianne quite a lot of GP's are not that up on EDS. I was only diagnosed last year, I found the British Hypermobility site very good. They have pamphlets you can print and bring to your GP (they recommend you do this) as people with EDS we have an issue with pain control and at times for us to get the same effect as those without it we would have to take three or four times the amount of paracetamol.
It's hard I know, we are suffering enough with constant pain, severe immobility issues to name but a few and on top of that we have to beg constantly for effective long term treatment. Remember you are the expert in your own body, get your GP on board, bring him in the research. Contact the Hypermobility Association, they will help also. All us ZEBRA'S have to stick together.
My pain team can't do much for me until I get other issues under co tell or investigated, I met this dr who was an absolute god send (Dr R. Wright) she was the best dr ever. My first appointment with her at the GP she was almost an hour behind but she was researching EDS before she met me so she wasn't stumped on how to help me. When I came in and told her about my pain she was asking me is it EDS pain for another type of pain and I was so relieved that some doctor actually knew what she was on about but she was only temporary and has left the practise now so I'm stuck with the other airheads who can't even pronounce my name after how many years of knowing them (pronounced Tee-Ann). I'll go on the EDS UK site and show the GP I'm seeing next week some of the printouts just to inform her because the last time I saw her she was like oh do docs know what's wrong? Told her EDS and she was like okay let's take you off the codeine and give you paracetamol 😐 I told her I'm not leaving til she prescribes me my usual pain meds coz suddenly stopping it can cause withdrawal and many other things so she cut my dose from 30mg to 8mg I was so upset but then I saw dr Wright and she gave it back to me. The last time I took tramadol (2009) it did nothing pain wise but it only made me feel sick and have fits, if I get prescribed it again I'll ask my doc what to look out for (red flags)
The other thing I use is Curcumin (Tumeric) it a powerful anti inflammatory. It's a herb I send to England for it to Homeherbs. I get the 1:2 strength in liquid form. I had become immune to naproxen as well as they put up my blood pressure. I also go walking in the swimming pool twice a week and I find that helps also. Tianne I'm afraid it is trail and error with getting proper pain relief for us with EDS but when you find something that works stick with it. I don't know where you are living but I went over to an orthopedic surgeon in Bristol whom I found had great understanding of the issues we have with HEDS along with the various issues going on in our bodies. Let me know if you cannot locate the Hypermobility site and I will root out the address.. Best of luck, keep smiling and let me know how you get on, if you want
In regards to pain control, I use 2x30/500 cocodamols, tens machine, body pillows, heat pads and sometimes sitting on a pillow but it doesn't always help me, Epsom salts do nothing for me either, even today going from sitting down to standing makes my spine hurt, also if I look over one shoulder or move my head sideways my neck crunches about 4 times and I feel it going up the cervical vertebrae, middle spine between shoulders gets but is too painful to click and lower always hurts, actually curves right in at the bottom but if I sit or lay and move my legs my lower spine clicks, maybe the sacral joints coz it felt like my ass clicks and I know there's no bones in the cheeks lol, leaning forwards hip clicks at the front and I have to w sit and lean sideways for my hip to go normal after it does some massive clicking
Hi, thanks for your reply. It sounds like your current GP is a big part of the reason things are stuck at a bad point of pain not being looked at properly or 'managed' medically for you. That is discusting to hear that they cannot even pronounce your name. Sorry to hear that.
Are you locked into seeing them? Can you afford to access a completely different GP clinic for an initial chat? I am not familiar with your conditions but if you are having an ongoing pain problem this in itself deserves addressing, even if it is not fully diagnosed. It is sad you lost access to someone that was interested as someone that listens can make all the difference.
In your situation I would suggest you resign yourself to becoming your own advocate and consider getting a plan to access some other points of medical access. Any medication you try, still needs someone working with you that believes you, to help you find what works for you. Have you been informed of pain medications like low dose amytriptyline (for nerve pain & sleep), baclofen (for muscle spasm) or gabepenton? I am not recomending any of these medications and have only found one of them of any use, but a half decent gp would work with you to try to make you comfortable and functional even if they did not initially want to prescribe a certain class of drug to a younger person for some reason. Let alone withdrawing a medication that is partially helping. For me, I would and have in my own life looked for ways to distance myself from a medical person that is supposed to help but is impersonal and arrogant. That is somewhat tolerable in surgeons but just the opposite of a competent gp, they are supposed to be pulling all the services together for you. No wonder you are not getting anywhere. Take care of yourself & hope you are having a low pain day.🌷
I would also recomend you ditch the concealer. Put it on after your appointments if thats what you need to be out in the world after a bad night. Be honest about pain levels and hopefully you can find a medical person willing to work with you.
So I went to my doctor this morning she was more concerned about my bmi and did nothing about my pain :/ I told her my meds aren't helping and she was like oh well you should ask another doctor instead lets do a blood test for diabetes cholesterol and thyroid all this other shit, so I now have to wait until the first week of January to see another doctor
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