I suffered for 18 months with full body pain including face head and private parts it hell to live with. I took many medications but none work. At times I’ve been suicidal many times. I’m not sure where to go from here anyone had anything similar.
Thanks.
Jimmy
that sounds awful. Did you see a dr.? Sometimes I feel like that so I focus on each exact point of pain. It’s usually along a nerve coming from my spine that is pinched because of arthritis. There are nerves that radiate into hip, groin and all the way to tingling in bottom of feet. That’s sciatica,hate it. My neck nerves compress and pain is in head,shoulder and arm with tingling fingers. Sometimes I get trigeminal neuralgia which is facial pain. I am suffering alot today so I related to your post. I got answers from arthritis dr. I hope you get a diagnosis and some pain relief. It is very depressing feeling like that for so long which why dr. prescribed antidepressant to cope. Get some answers and keep posting.
Hi Sugaree. Thanks for your reply. I feel for you Any pain isn’t nice but when you have pain in multiple places that’s even worse. Have you found any medication that helps I would been interested to know.
Jimmy.
I am prescribed butalbital for headaches and neck pain, tramadol for back pain. I also take a muscle relaxer at bedtime for neck. I have arthritis and this helps some but nothing actually gets rid of the pain. I have physical therapy exercises to do at home . Unfortunately I usually just have to cope with it ,heat, ice. I also get very depressed alot. I cope with medical cannabis,legal where I live. I’m not sure if you have a diagnosis because once you have a good doctor you can get diagnosed and medication to help. Feel better
Hi, I have had atypical facial pain for years and now body pain. The only thing that worked for the facial pain is duloxetine but I can still get breakthrough pain linked to migraine. The duloxetine took time to work but really helped, I don’t know if this is one of the medications that you have tried. Things like heat might help, I spent a lot of time lying with my face on a hot water bottle. Also meditation which I know is tricky to do when you are in pain. Try and keep hopeful and know you will find a way through this.
Hi Thanks for your reply. I’ve just started to take duloxetine I’ve been on it 2 weeks 30 mg I feel my pain seems worse but obviously it will take time to work. The duloxetine is for my body pain but up to now nothing has helped I’m hope this medication might help. How did you facial pain and body pain start can you remember. It’s not nice being in pain.
Jimmy.
Hi, the facial pain started as toothache and was on/off for several years. One day about 10 years ago it started to be a constant toothache and got progressively worse. I saw multiple dentists until I finally got referred to a neurologist. I have had chronic headache and migraines since a child so they think it is misfiring of the nerves due to that. You might need your duloxetine dose reviewed , it took time to get the dose right for me and it’s a bit of trial and error, 60mg worked for me for years until recently and I’m now on 80mg. The body pain started in my hands due to eczema 3 years ago and has got worse over this year. I am seeing various specialists to find out the cause and waiting for scans etc. Unfortunately no medication helps as yet and I have been told it could be Functional Neuropathic Disorder if they can’t find a cause. Unfortunately chronic pain can lead to more pain and is incredibly debilitating physically and psychologically. Finding a sympathetic doctor or neurologist is really important. Be kind to yourself and keep reaching out for support, everyone’s journey is different but keep the faith that you will find your way through this.
Hi Thanks for that. My pain came out of the blue. I’ve took lots of medication. My pain is full body it moves from left to right side every few minutes. I have chronic headache and facial as well ribs hurt as well. I took Mitrazapine for a few months and came of them as they seem to make things worse. How long does it take for duloxetine take to work for you and does this med help a lot.
Jimmy.
Hi, everybody is different but it can several weeks for the duloxetine to work for nerve pain. The dose can be increased gradually starting at 30mg and going up in increments every couple of weeks, 60mg seems to be a good dose for nerve pain for some people. It definitely helped with my facial pain and I don’t get the electric shock sensations I was getting when it first got worse. I suppose the key is trying to find out if your pain is nerve pain or something else and that’s where a good health practitioner should be helping you. With my hand pain I have been desperate and it was only when I asked for an amputation that anyone took it seriously. The same thing happened with my facial pain until they investigated it. Unfortunately it can take many trips/telephone calls to the doctors before they do anything which is exhausting in itself when you are in so much pain. I have someone come with me to my appointments so I have back up as I don’t always think I am believed when I am on my own. I hope you get the support and answers you need, you could think about asking for the duloxetine to be increased especially if you have been on the 30mg dose for a couple of weeks. I take a good magnesium and vitamin D supplement as well and loosely follow an anti inflammatory diet. Things like green tea and flaxseed can be helpful.
Hi yeah my GP is ringing me on the 16th December to see how I’m getting on with deloxetine so he might up the dose. I really can’t be bothered to do the things I used to it’s so depressing being in pain I don’t mind a little pain but when it’s everywhere it hard.
I’m hoping that the duloxetine kicks in I’ve only been on it two weeks. I appreciate your commitments.
Jimmy.
I have the facial pain in both sides of my face plus my whole body it’s a living hell.
sounds very much like you have nerve inflammation occurring.Yes the facial pain can be Trigeminal Neuralgia being so severe it’s reknown as suicidal pain.I suggest you check your levels of vit D ,folate iron,red cell magnesium,vit b12 which should be over 500 pmol/ l .This deficiency effects the nervous system destroying the myelin sheath any where in the body .From my research vitamin B12 injections given repeatedly will decrease the pain .My elderly friend had a flu vax & had excoriating facial pain .I couldn’t get her Dr to give her b12 shots but I gave her methyl sublingual lozenges 5 mgs which decreased the pain remarkedly .I hope this is valueable info for you .
hi Jimmy , Yes fatigue, tied, can’t do what I want, used to be able to, I can beat this , no I can’t , hopeless, lost , lost my mind and sole , no place for me anymore, I can’t leave this life , No one understands has any idea what I am suffering, pain beyond pain , cold , cannot move , everything is just hurt and pain , you don’t need me , I am wreaking your lives , let me go .
I know I have been there no hope , what is faith , walking the streets at night when I could .
Well, here I am now , after a journey and still in that journey enjoying life again , yes it has it moments, yes I did get and still am but , I did not realise, while I was fighting the pain looking deep for answers , How could I be making it worse , yes I do , yes we do , how do you know when you do not suffer how I am feeling , you tell me it is my head, my brain , great not helpful.
Yes now I know , hard as it is it in the moment, I stop , Breathe, Tell the pain , hurt I know you are there, difficult, compassion, for me for others close, put yourself into a comfortable, warm environment embrace, distract with your favourite TV or music , take the medication at the correct times of day , ask if you can take a boost when things are bad having recognised the situation as I explained. Believe in your body , yes pain is real but when being understandable frustrated, worrying where it may lead, anxiety it turns up the pain , the volume . You must engage more than three senses, sight , hearing, touch, feel , taste, it really after trying and during trying works, the more I now engage , I can do this, You Can,
When you stop beating your self and except, for me it works .
Yes , finding the medication, changing , taking at the right intervals matters.
Compassion / Pain clinic really helps / This site really helps your not alone. We all really want you and no you can bring down your pain levels and suffering.
I know of course we are all different, I know I can only talk from my experiences, I just hope a little of what I say makes sense , I am just so sorry you are going through so much. Use the help as it all adds up little by little of all these wonderful, kind people on this site , full of knowledge from first hand experience and in some cases the expertise of specialists that help them.
You will make it through and overnight start to bring down the volume, exploring this site , play your favourite music through earphones if you can . Love to you and all xxx
Thanks very much for your reply Crystallmatters
I’m not sure if I fully understood what you mentioned but I get it.
Do you suffer body pain?
Yes, it can be crippling and the suffering is beyond horrendous. I did end my life , I woke up in intensive care as my wife found me and called an ambulance, hard to believe when I love my wife and girls so much. Pain can just take control. I have an Abbot Burst paddle stimulator implant under by rib cage fitted with a wire that runs round to my spine with the paddle with lots of electrode's on to help stimulate my leg that was wasting away due to neuropathic nerve damage from the failed lower back surgery. As I write this to answer your question, I have been up the whole night in agony . I wont be able to work today, one I took to much medication last night and my wife is fuming including lots of my morphine, I have learned to just except the new me and how to just listen to You Tube music for chronic pain and relax and let it take its course. There is a lot to my story a mental health team stepped in because of what I did, The have been a great help alone with both Jon Radcliffe Hospital and Oxford Optimise team, learnt so much about how my brain is processing pain and in the moment I can trick, distract or Breathe , I would never recommend what I did, it was not nice waking up and seeing the tees of my beautiful daughter's and my wife so upset , many questions to answer why, in the moment of too much pain enough was enough no other thought processes just pain, The beast. I apologise for how my English writing is not great and I skip, I just write how I feel in the moment and dry to get across what I know , I feel the pain for others suffering because I get it. At last I also have a team that don't think I am mad, Tell me pain is real and help me. Flare ups are horrible and often , if you go with them and relax ,it helps bring down the pain. There is so much more to it all , yes I have FND. That's another story. I did not know what faith or hope was and once just laughed at it but now , I get it, eventually little by little really small steps , finding the first building block to aiding your pain, learning from experts and people on this site with coping techniques that work I you can get there to having again a bit of our life back , once on that path and practicing your get there. I need to lye down now so good bye can talk later because I am in a flare up. Lots of love to you and all xxx
Hi Thanks for telling me your story I appreciate it. Yes I have been very suicidal many times. My whole body is in pain head to toes. I get servers attacks of pain throughout my body last 5 / 10 minutes many times a day. I’ve had no diagnosis at all I’ve had this condition 18 months. It’s a living hell it came out of the blue. I’m currently taking Duloxetine just started 2 weeks I hope to find some relief it will take a month or two to fine if it’s working. What medication do you take yourself and does it help. Yes pain can be very depressing and debilitating. I hope you find away through this.
Jimmy.
You are welcome, Yes I take Gabapentin 30mg 3 times a day, diclofenac 3 x same time .
With the damage from the lower failed back surgeries and developing neuropathic damage , John Radcliffe hospital fitted me with a Abbot Burst Paddle implant , this helps a lot and is on all the time with a ten year battery , I am very lucky to have this. I regained my right leg when it was fitted and the on for three weeks.
I have back up ora morphine which I often use. I have a lidocaine patch on my lower back at night which works. I do top up with either paracetamol or panadol extra. My problem is I am not great at pacing myself but getting better. I also still struggle to except. My I pad and ear phones are valuable to me for distraction and soothing music , Hot bath when needed or hot shower , sometimes I switch it to cold to shock me, I do excise even when in pain , night walk to look in shops for distraction and help blood flow. Although when a flare up happening I am knocked out.
Yes the pain will try and climb if I don’t kick in distraction or except and bow down and just hot drink and watch TV or I pad . Engaging again with family helping and stopping negative thought that fuel the pain . I was in a terrible place mentally until with help I got a grip on understanding more about the brain and pain . Using optimise techniques important . So when I talk about using your senses to distract you it really does help.
So yes I do take less medication on the whole because of better body and mind, plus better pacing. The problem is when yes the pain rips through the whole body at the same time, it is so painful, so this is when you engage compassion and stop breathe recognise the situation, you can help your self , to be honest it is a lot of experimenting, taking a few risks to find out what works.
I think I have learnt for me trying to push through the pain is a bad idea.
I hope a little of what my experience is helps you, I think this is the key , on this site all the kind people give tips and you pick up little things that then add up to be valuable in your pain tool kit . Remember to keep some favourite pictures by your bed.
Good luck , and do push for a pain clinic , even if a long wait because it soon comes down if you do a gentle telephone reminder you need it . Love to you and all
I’ve had full body pain rhs for 5 years. Private parts painful + numb. Jaw, face head all the way to toes… I’m becoming desperate with this and get your agony. I’m not sure how to live with this anymore.
20 years ago my wrist starting aching. carpal tunnel tests were negative. about seven years ago I was finding it hard to walk,felt like sciatica also my right shoulder was painful. Four years when Iwas standing teaching primary kids I had this horrible pain in my groin and shooting down my leg. I couldn’t stand up and realised I’ve been pushing for too long against all the pain. Also had niggling neck arm and wrist pain. Over the last 4 years things have got progressively worse. I have a bulging disc at L5S1 + annular tear and some disc issues in my neck. Bursitis in right hip am+ shoulder. Had numerous steroid injections + a shoulder operation. Nothing has helped. But it’s way more complicated + I fear they’re missing something. My foot, Achilles calf + knee are painful + cramp up. My private parts are numb + painful. Inner thigh groin numb + painful. Pelvic pain, extreme rib pain + tightness. Both shoulders stiff + painful, Neck, both sides of face front of neck, head (all worse in right) tight, painful, numb. Limited use of Right arm due to pain + stiffness. Throat constricts. Now my intestines keep cramping up + my digestive system is messed up. Tried everything: chiropractors, physio etc. Going crazy with this can’t sleep, can’t do much, but the worst thing is the pain + disturbing numbness. This was a bit long you can see why Drs glaze over when I describe my symptoms.
yeah it’s definitely difficult to live with I’ve tried lots as well but I was chatting with someone in my local area. Who had similar to me and he said most of what I’m experiencing is a symptom of depression as depression can cause headaches facial pain etc . I’ve just stated 60 mg duloxetine it’s an anti depressant I felt terrible the first few week on it but it seems to be helping . It takes 6 to 8 weeks to kick in so I’m hopeful look it atypical facial pain depression.
Thanks.
Jimmy.
Apparently it’s low serotonin and norepinephrine that causes chronic pain so that’s why they prescribe SNRI antidepressants to build up these neurotransmitters
Those antidepressants hype me up and increase anxiety Edie 😫
Doctors glaze over at everything they can’t understand. Years ago, issues were investigated and attempts made to find answers.
When did you last have a ‘hands on’ examination? I can guess the answer to that
Hope they can help duluxotine works for you. I’m on Nortripyline for nerve pain, it doesnt work so i’m switching to pregabalin. I don’t have depression just pain, I’ve had full blown depression before so know what it is+ how hard that can be. I’m so through with the pain that drills through my body. Hard to explain to others
My sister is taking Nortripyline as has some pain symptoms She was taking 30mg and they didn’t work so now she takes 60 and they work fine now. It’s trial and error I suppose to see what works. I hope the pregabalin gives you relief
Jimmy.
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