Hi all - i usually handle things ok,and as long as the pain stays on a level then im generally ok,however after the last lapse im really not getting back on top of it. Ive had eye pain for two years which changes in intensity, and now the pain is constantly down my left side of my face including the eye, all the people I see state that its nerve pain and give me pain killers - however with a 2 year old and a 7 year old i cant function on them, yet i cant cope anymore with this level of pain
This last bad episode started about 6 weeks ago with horrendous pain in my wrist for 4 weeks, a visit to a & e solved nothing, and each time I get this new pain somewhere it leaves that limb or part of my body with uncontrollable twitches. My left eye started to black over when the pain happened and now its gone almost completely blurred - the eyesight has deteriorated and im starting to get hallucinations in it. Yet again opthalmologists say my eyes are healthy and my neurophysiotherapist can only give me exercises to do,and my neurologist can only give me pain relief, Ive spoken to St Thomas' and my consultant agrees its neurological and will request that my GP refers me to a neurologist there who knows about APS so there is a bit of hope - but in the meantime my hope of starting plaquenil for the general pain has been dashed as they wont start me on it with a history of sight problems due to contraindications of it. I feel helpless and tired of being so ill and trying to keep on with life without boring people and losing friends because im always so rough. I feel so depressed with it that if it wasnt for the children then i wouldnt carry on. Does anybody else have this and have a success story for me!! Im scared of seeing someone new as tests always seemt o come back negative for everything yet obviously something is amiss seriously, I think that the damage to my nerves is killing everything off and im worried all the time. If the pain wasnt so bad then i could put it to the back of my mind but i just cant when its so in my face all the time. I would be so convinced it was MS if i hadnt had it ruled out it is just so similar-yet without the acknowledgment of the seriousness of it because so little is known about APS. Sorry for the long one guys xxxxxxx
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emmaj
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I'm sorry you're having such an awful time right now, if Plaquenil not an option what about asking for alternatives, I take pregabalin/lyrica for pain also slow release tramadol, I'm sure others would have suggestions too.
A referral to a neuro sounds good, I'm looking into same myself as neuro symptoms got worse since my stroke.
Thank you both, Im taking pregabilin but im just even more tired with it. Let me kno how you get on Sheena, I think its strokes that are doing this to me x
When I felt very similar to what you are feeling right now;essentially totally overwhelmed, I got myself a therapist to balance me. I don't think I would be here without her. I think I would have lost faith a long time ago. The doctors did. When I was 48 my neurologist told my husband and me that I had two years to live at the very most and it was time to put our affairs in order. I watched my husband silently crumble before my eyes. I wanted to leap up and strangle this guy for hurting my husband in such an unspeakable way! I had no intention of dying. I had intentions of finding a new doctor. He quickly got up and left leaving no time for questions. I think he was afraid I was going to pounce on him with the certainty of a panther. He delivered a diagnosis of CNS vasculitis and had already had it second opinioned at Mayo Clinic.I thought he impacted my family drastically. Now I can put it in perspective and know that it was the disease itself I was so furious about.
In particular, my daughter was only 15 years old at that time. I was such a selfish and ignorant person back then. I'm a much better person now, I hope. I'm certainly a much stronger person now. My therapist is responsible for keeping my head on straight and simply does not hear words like I quit, can't, won't, don't, I just want it all to stop, if only the pain would give me a break. She helped me face up to the facts: that this is not just MY disease. It affects all those who love me and whom I love. They are just as sick with it as I am because they can't help but feel what I feel. Every one of them would take the pain on themselves if they could take it away from me. It has affected every part of their lives just as it has mine no matter how I try to hide it physically and psychologically. I got balance and control when I hired my therapist. My sense of humor reappeared.
It took three therapists before I found one I felt comfortable with but eventually I did. More importantly, I did not give up just because the first two didn't work out. When I had better psychological control I could control pain better. I learned ways to distract myself from it, instead of allowing pain to distract me from my goals. It sounds to me you have been to all the right doctors except the psychological aspect of your disease. The doctors you've seen are obviously at their limit with this strange new disease called APS. Perhaps they just don't know how else to help.
Ask your doctors about the 72 hour Fentanyl duragesic for pain. I have had it for 5 or 6 years and it got me out of a wheel chair and up and about with a cane. Don't get me wrong I get knocked down flat on my back sometimes. Quite recently, in fact. It won't take all your pain away. Think of it as your first soldiers of attack. It knocks out enough pain so that you can function physically and mentally. I look at my mental health as though it were another appendage that I use every day, because I do. For the sake of my family and those who love me I took it on as my JOB to keep well and try to be a positive force in my family and society. Even if my society is itsy-bitsy.
Anyway, devastating diagnosis after diagnosis, it was the therapists who steadied me. I have had the one I have now for 4 years or so. When I got diagnosed with APS in 2010 or 2011 on top of all the rest, at least I immediately knew how to formulate a plan to research it, find the specialists, integrate the doctors and keep putting one foot in front of the other.
You know, if a therapist doesn't work for you- just stop going to that one. Research another and keep trying. You will learn many survival tactics to deal with pain. What you need is a therapist who specializes in pain. That is what my therapist considers her field of study. Although it certainly incorporates much more than pain, pain is the primary focus and how to deal with it. Call the department of psychiatry at your hospital and ask for the resumes of their pain therapists. Pick one and make an appointment. Taking the help is the hardest part. A year from when I started seeing a therapist 2 x month or if crisis should arise, I was a much stronger person with tools to fight pain.
I remember what it was like feeling as you do now. Know that YOU can change it. Warm wishes, prayers, and best of luck,
Hi Canary diamond thanks for your strong words - I am having a referral to the Homeopathic hospital in London so they may help, and APSnotfab I am under DR Khamashta already - he is the one who says I need a neurologist, I have been tested for Lupus and the nurse who called me tody said they dont think its Lupus symptoms, so i really dont know - just as i think im under the right person I have to then go and see somebody else,which probably doesnt help my mental state! My motto is you can fight what you can face - but i really dont know what is happening and how bad it will get so i dont know how to deal wih it! I just see myself getting worse with no answers x
Hi Emma: I don't know that there will be a "right" person. I think it will take a team of people to put their expertise together in an effort to come up with a diagnosis for you. But just because it has a name won't change it's behavior. You'll still have disease. Homeopathic medicine certainly has its place in medicine, but, frankly I think you are already too complicated. I'm a pretty strong person too, but I learned I could be stronger because I learned how to mentally fight pain. I learned what to look for in my body that I may be doing unconsciously as a result of pain... For example I learned I clench my jaw when pain begins. Now, when I catch myself, I know to begin relaxation exercises right away before I create jaw pain from clenching. My jaw line is actually receding as a result of this habit as I have done it since I was a child unconsciously. All these little things that we do, combined end up a big pain.
You need to get control of your attitude. Read your last sentence, That's not you! You are no defeatist! You know there are answers and you will find them. This is just a very bad time but time passes. This too shall pass. Even if you don't have answers you know you can figure out a way to deal with the symptoms. Your 2 and 7 year old are picking up all the examples you are setting; good, bad and ugly. Make it your JOB to do something every day to make your body better. Formulate a plan.
Begin by listing all the questions you want to mention to your neurologist. At the end of your appointment specifically ask him to conference call all the physicians working on your case and ask him to write you a letter communicating what was accomplished during that conference. Tell him you would prefer it in writing as you can more easily understand it at your own pace and you may need to go over it several times to completely retain it, due to your symptoms. It would be of great help to you. Tell him politely, you feel like a football being passed from person to person never getting to the goal line. Ask him bluntly what he suggests you do to remedy that.
Emma, you have so very much to be strong for. Those little miracles aged 2 and 7, were sent from above to give you reason to keep trying. I'm a firm believer that every thing happens for a reason. Please, get a good therapist to keep you steady and realistic. To remind you what is really important to you and what doesn't really count at all. It helped me so much, I just want to share the power I received from it with you.
Keep in touch after your appointments. I truly hope this helps.
sounds like the pain I get in my eye/eye lid and left side of face been having it on and off for quite a few years. First they said nerve pain but did not improve with nerve meds. Have noticed since Ive been given tanzaparin to use when INR goes below 3.0 (on warfarin) havnt had as many attacks. Have Sneddons syndrome and eye and face pain are part of the condition just trying to find new neurologist who knows about Sneddons.
I questioned Sneddons and he wasnt too convinced - im awaiting a referral to a neurologist who knows about APS so maybe I will ask them about that too - hope you find one xx
I am under dr Breen at guys and I must say she takes the multi disciplinary approach very seriously I have been referred to all the relevant specialist who deal with the complex cases although I am disheartened at the minute with time taken and lack of progress with treatment to ease my suffering .
Dr Paul Holmes is a neurologist at guys who according to the thrombosis clinic deals with most of the complex cases which involve APS I see him in a week .
With respect to the eye pain if they have examined your eyes and all looks well and things like optic neuritis and NAION have been ruled out then it must be nerve related and maybe the neuro can help.
Thank you Dan, I had a call from my GP today to say The lupus centre have asked for my GP to refer me to him - so it seems thats the way forward, I hope you get on ok - would you let me know how you get on, the GP upped my pregabilin from 25 to 150,plus paracetamol and codeine.- everyone including my neurophysiotherapist says its nerve related neurological. I dont know if you feel the same but the stress of waiting to see someone new is horrible,and im as scared of them finding nothing as i am scared of them finding something!! Ive been round the system and felt like a hypochondriac for so long im just exhausted and sick of the stress. Anyway thanks for the info x
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