I have terrible attacks of PN pain in the evenings and struggle with low lying PN pain during the day and now my myofascial pain is just awful. I feel sore and tight everywhere and feel incredible fatigue and often nausea. I am a mother of two young children and it takes everything Ive got just to make sure they are looked after. I feel I have nothing left and all I want to do is lie on the sofa with all my hot water bottles and sleep.
I am on Ametriptyline 40mg (I can never spell it!) every night. I have oxynorm fast release morphine for my evening attacks and am wondering if Baclofen may help. Have any of you found anything useful like Baclofen for myofascial pain.
I am feeling pretty desperate.
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Emmax
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Yes, for me Baclofen is the best. It helps with the myofascial pain during the day and especially at night when it seems worse, or on waking in the morning.I tried Daizepam to start with and it wasn't for me, made me feel very low but Baclofen was excellent. I take 10mg with 25mg of Amitryptyline before I go to bed. I also take Pregabalin, that's is also worth a try. For me though was emu oil from the States which I put in the vagina every night as I can't tolerate Oestrogen - I am 55 years old, it saved my life with the dryness in the vagina. Worth using it as a lubricant if you are sexually active. Right off to the Doc's. I take it that you have sensitivity in and around the vagina? how did it start, always useful to know other people's experience as no-one seems to know what the problem is to start with. Best of luck!
I am not sure whats worse - back or front! My attacks are rectal spasms, the pain goes down my legs. It starts like a toothache crossed with bad period pain and cranks up so bad I can hardly stand. The pain comes in like a freight train, sweating, nausea - lovely - really helpful trying to make dinner, homework, bathing children. Most nights are a blur. I gave pregabalin a go last year but I felt scarily spaced out.
It all started 8 years ago, in my third trimester I was in great pain but never scanned. She went two weeks over due, I had walked around 4cm dilated for a week. After I was induced they discovered my daughter was face presented. There was a lot of emergency c sections so I had to wait. By the time the doctor delivered my daughter she was basically stuck. It took a long time and forceps to drag her out. Thankfully she was fine but I ended up with blood transfusions, fractured sacrum, extensive nerve damage and now years of pain. My problems were only put down to PN 18 months ago. I have had about 7 nerve blocks since in London and feel I am now worse. I am booked to go down to Nante in June for their opinion. I have really struggled with managing my own medication as I feel left on my own with regard to this. Better go, I have a 12.00 Dr appointment to beg for Baclofen! This website has been fantastic for me. I have only just got up the confidence to use this helpful forum which is a huge support.
You poor thing, what an awful time you've had. I thought my diagnosis took long enough to get but only half the length of time you've had to endure the pain. I really hope the doctor in Nantes can help you.
You're right, this forum is fantastic. Before I discovered it I felt so alone with this awful life changing pain. Now I know there's always someone to help give you support on low days. I'd love to meet up with other people in my area.
Also, hope you don't mind me asking but are you having to pay for your Nantes appointment, or are the NHS funding it?
I hope you got it, Baclofen that is. I can do so much more now so hopefully you will be able to bath your babies without a flare up. I have a new granddaughter and am pleased to say that I can bathe her and get her out of the bath fairly easy, she is so slippery though. I have had 11 nerve block injections and agree this caused me other issues, like IC etc. Definately sounds that your issues were to do with your daughter's delivery. I know what you mean about the sweating, that means a flare up is happening or about to The other thing to consider is to take a Diclofenec when you have any flare up, its stops the pain getting out of control. Its an anti-inflammatory. I went to Nantes to see the team, but it would take me pages and pages to relay my story, Mine has been going on for 9 years now. Mine started with a routine smear so we are sort of in the same situation. I also have two large cysts on my spine, another story. Did you see Dr Baronowski, suspect you did. If you would like to chat over the phone I would be happy to exchange stories. Let me know and I'll send you my e-mail, up to you. What happens when you have a bowel movement? I know I keep on about the sensitivity but do you get that too? Good luck with the Baclofen I am confident it will help you.
I have the baclofen! How much do you take now? Obviously I am starting low as instructed but curious how much people end up on.
My birth nightmare was with my first child and somehow I managed to have another child 2 and a half years later - elective c section. I actually did quite well recovering after Ellie with intensive physio, then I had a massive flair up 2 years ago and it was like I was straight after her birth and I can't seem to get any better this time. Funnily enough my flair ups often start with the sweating, then a bowel movement sets me off and the spasms don't stop. I often don't make it to the toilet on time because I don't know whether it is just a spasm or I really need to go. I did do a year with dr b and am now rightly or wrongly managing with my gp and a great new women's health physio in sw London and a lovely myofascial massage lady. She has started internal work and certainly seems to know a lot about pudendal neuralgia so that gives me hope. I would love to be in contact you with you. I want to here all about nante. I go in June and after a lot of deliberation have decided to go down on my own for the week. Do you think I will be fine by myself after the block? It is during term time and we have no family in the uk so it is just easier if I go and my husband minds the children. My son is aspergers so he is better left at home and school with his routine.
Hi Emma, I had such a bad headache with half the normal dose of Baclofen, I am so sensitve to drugs. I have been diagnosed with pudendal neuralgia but I beleive it is caused from pelvic floor dysfunction. I have had so many surgeries for endometriosis and my hips are out of line from tensing my muscles. I have bum pain, vaginal pain, bladder pain and sacroiliac pain. Do you live in London? I am struggling to find anyone that does pelvic floor physio where I live. I have had physio with 4 different people and none of them address the problem. I am so sorry that you are in so much pain. I too do not sleep with pain and struggle to get on with life at all. However I found that Amitriptyline and Duloexetine and Pregabalin made me more anxious which made it worse and I feel 10% better with no drugs except for painkillers (which don't do a lot for nerve pain). I also started clenching my jaw and neck muscles on all of them at different times. I probably tensed my pelvic floors too unknowingly. I beleive I have a sensitive nervous system and I do weird things with my muscles when on nerve related drugs. I think Diazepam may help but doctors won't let me have any due to addiction and rebound anxiety when you withdraw from it. I hope you are starting to get a bit of help from your physio. Thanks Melanie
Hi there, every few months I have this problem. Could you try and resend tomorrow. I have never been able to work out why it happens but it usually sorts itself out in a few days. Looking forward to hearing from you. The sun is out in London so that immediately helps make you feel better! Emma x
oooh lets try and meet up sometime. I wouldn't have to justify my attachment of my spotty hot water bottle to you. I did have to explain it very briefly to my sons teacher at parents evening the other night. She now thinks I am potty!
I also have very bad burns from the hot water bottles. My skin is very blotchy and red my back, bottom and legs. Every time I had a nerve block my bottom got a lot of unwanted interest! I had to laugh or I would cry!
Off to a school quiz night tonight and praying for no public bad attack! Ex
i guess indeed it is not myofascial pain, pudendal nerve entrapment leads to muscle spasm, and it got nothing to do with fascia, the best thing is to do decompression surgery with Dr Roger Robert in France, it is not expensive and it will comfort you soon (hopefully)
The physic said my whole body is on red alert from trigger points spreading which she said results from chronic pain. It started off with just pelvic pain, legs and tension headaches from pain and has crept everywhere from tension. I definitely have pudendal neuralgia and the myofascial pain has definitely spiralled from this. I am booked in to see Dr Robert in June and desperate for his input.
I started Baclofen to help with spasms and myofascial pain yesterday and by brain is so mushy I have been taking 10mg Baclofen 3 times a day instead of 5mg to start and I swear my body feels slightly less tight. It will be interesting how I feel in a week.
Thank you so much for commenting. It is a great comfort knowing there are others out there.
10mg is quite a high dosage Emma, three times a day, no wonder you have foggy brain. Try 10mg before you go to sleep, this may be the answer. Talking of red alert, and you won't believe this, but I have had as issue with UL6 - that is upper left 6 is the dentistry world, since root canal. Fast forward two years i have now been told that the nerve pain, and that is what it is I am sure, is because of my pelvic nerve pain. So it spreads. Whatever next!
You are a star Jacqui, will cut back and go in slow properly!
Red alert is definitely a good expression. My massage lady finds pain everywhere, my jaw is awful . I also feel the pain causes terrible conjestion in my body. She has done a great course in pelvic massage so she gets into to my sore old belly and gets things moving. My friend who is a reflexologist told me a way to massage my hand to get my lymphatic system going. I will do anything to help try to break down the pain pattern going on in my old body ! Do you feel 100 years old when you get up in the morning. I feel like I have been kicked with boots the night before. Hoping the Baclofen will help this as I dread facing the world in the morning.
Anyway a good day today, not a 'bottom of the birdcage day' as my Australian uncle says! Have a lovely evening.
Are you from Aus? my sister went back home to Melbourne last week. Funny you mentioned jaw as I also have TMJ, what don't I have. This is common with people who have nerve pain. What doesn't help is that I grind my teeth. I believe that thru meds and pain causes strange sleeping patterns too. Interesting about the lympathetic system and massaging of the hand. Whereabouts are the trigger points? I am 100% sure the baclofen will help you, I have never felt the need to increase by more than 10%.jx
My husband and I are New Zealanders. We have been in London for 15 years. We did have an amazing 3 years in Sydney, we got back 18 months ago. I was under Prof Vancaille in Sydney who diagnosed me, then Dr B in London last year and now under my own care with the support of this website, my GP and my lovely phys and myofascial massage lady until I go down to Nante in June. I feel terribly high maintenance and it is a costly business keeping me going! Thankfully my husband is very supportive. I can't imagine what it is like suffering with chronic pain alone. I will send you info when I confirm I am massaging the right part of my body! I gather the lymphatic massage is to use your thumb on one hand to firmly rub the line up from your knuckles up to your wrist. you can kind of see the lines up from your knuckles. My physio also wants me to massage my own face using trigger points like between my eyebrows, ears, jaw to release the tension in my face. There is a great place to massage the hard mucsle/ gum at the back of your mouth. It is a muscle called the terigoid? muscle and it holds a load of tension if your having issues with teeth grinding etc. Again I will send you through clearer info if I find some.
I was with my reflexologist friend yesterday and I was saying aren't you sore there and there on your face and she was laughing saying no, no! I don't even mention my sore face to anyone else! Thats where this website is so great because people are sore and in pain everywhere. Most of my friends say 'how is your back'? because they can't exactly say 'how are your rectal
spasm attacks' etc! I have to laugh or I'd cry!
Have a good day, I am very excited, it is massage day!
My "chronic neuropathic pelvic pain"- diagnosis courtesy of Dr A Baranowski, is in my jaw!!
Can this really be possible?
I have an appt to see my GP about Baclofen too.
This all sounds so similar.
Those of you who know my long story will recall it began with a brutal Vaginal hysterectomy in 1994. It was 2008 when I met Dr Baranowski, but several nerve blocks later, he will not agree to decompression surgery. He has never heard of a 100% success story, so he has offered my psychological help to talk through my pain, with my goal " to reach acceptance".
Technically, I am still under the Pain department at NHNN, but haven't been up for a year.
They "encouraged" me to find help locally.
So, I return to the local hospital pain clinic where I was first seen in 1997!
I feel like I am going backwards!
But thank you for posting Emmax, as this has spurred me on to think again and try to make things happen rather than festering in a slump.
I seem to fester then have a burst at fighting the pain war. I think for me I can't totally accept the pain, I need a balance between acceptance and also the energy to keep trying to find ways of just getting through the day.
I am only day 2 of Baclofen, so early days. I really want to hear how you go with the Baclofen. Do you wake up feeling 100. As I said in an earlier post, I wake up feeling like I was kicked with boots the night before and also completely sedated still from the Ametriptyline. I need to take it earlier at night.
How can anyone accept this awful pain, has anyone felt better by having psychological help? Very few I expect. I would also like to know if anyone has had relief from the endless rounds of nerve block injections? My opinion is that if you have no relief after three don't put yourself thru anymore. No I never wake up feeling 100% depends what happened the day before. Yesterday I tried on around seven pairs of shoes and because of the bending down to try them on last night the pain started and today was in a lot of discomfort. Yes take the Amitryptyline and Baclofen around 8pm.
Jacqie and Emmax, I am so happy that you are both here today!
Thank you!
Recently I have been so low that I haven't even been getting dressed. My husband is ashamed of me, I am an embarrassment to him. But equally he is concerned, and desperately wants things to improve, not just for him but for us both.
Last week I went to see the Psychiatrist who had been asked to assess me. I was dressed for the first time in 2 weeks, and I told him.
I told him that I was in despair, and was self-harming in order to "feel" something else other than my pain.
At the end of our 30 minutes, much of which he spent typing, he said to me "You are doing very well. You are not depressed. There is no evidence of depression at all, so I can discharge you!"
I get copies of his letters, and he had written that; I presented as a well kempt lady, with evidence of low mood, but no depression. I was discharged back to my GP!
I was furious, because the whole letter was a lie. He hadn't heard me at all.
Every day is a battle. I am tired from not sleeping. I wake with these dreadful spikes of pain, like hot blades shooting up my vagina. I am on 100mg Zomorph for pain, 60mg Duloxetine for mood, after 13 years on Prozac. I was taking Valium 5mg as and when I had muscle spasms, but the Psych stopped this, saying that I didn't need it!
So, with all this in the last week, I am seeing my GP on Monday to discuss Baclofen.
Do you think it will be a battle? Should I mention any thing specific to back up my request?
I read about it recently, which is why I was going, and then Emmax posted and it seemed to be confirmation that it is the right thing to do.
Just on a side note Emma, when my pain started my boys were 4 & 6. My eldest has Aspergers, and I am, was, a teacher for 21 years. When my career ended due directly to my pain, double incontinence due to poor pelvic muscle control, and too many absences, I took my children out of school and Home Educated them. This worked well for both of them, but particularly the eldest who liked routines and security.
They were a great motivation to get up and face each day!
Both went on to University.
So I wish your son all the best. Chronic pain, and Aspergers can be a challenging combination.
If you ever want to discuss Aspergers, you can always send me a private message, and we can make contact.
It is so interesting hearing about everyone else's cocktails of drugs and types of pains. I get the rectal stabbing pain every now and then along with the pain attacks I get everyday. Thankfully my stabbing attacks are not everyday and don't last that long - poor you!
You also deserve a medal for home schooling. I had taught for years before having children and when things were at their worst with J not coping at school, I thought that I would have to homeschool him. But thanks to biomedical intervention, diet, minerals, chelation, occupational therapy, and psychological support J is now thriving at school. He is still a pain to live with but he is happy and that was our ultimate goal.
I too would love nothing better than to be snuggled in my pjs on the sofa all day. The only thing stopping me is the fact that I have to drop the children off and pick them up and take them to activities and playdates and parties. My husband takes my daughter to swimming training on Sat and Sun mornings, goes for a run, then comes back to me still in bed, the guilt and feeling of inadequacy is enormous. Everyone looks like a super mum to me. I have also put on a lot of weight which doesn't help. Although I get dressed, I wear sweatpants, ugg boots and baggy sweaters because I hate the feeling of tight clothes. I love baths, hot water bottles and pjs.
Now for the baclofen I am a medical nightmare so am not really qualified to give advice but when I was at the doctors, my gp was thrown when I mentioned baclofen as she only prescribes it to her ms patients for muscle spasms. I explained that it was proven quite helpful with a lot of people with pudendal nerve issues of spasms. I had to push the spasm bit!
She said I could try it but I have to come back in a week to make sure everything was ok.
For the sleeping, my ametriptyline 40mg at night and now 10mg of baclofen knocks me out and I sleep through most nights. I used to be up all night and a zombie all day. I must say I am still a zombie all day! I stopped taking slow release morphine to help with the peaks and troughs of the fast release morphine but I felt depressed I was just taking a lot more morphine, so I just use the fast release morphine (oxynorm) , usually around 10mg then 10mg again an hour later when I feel the freight train of pain rolling in. I just deal with the low lying aching and pain during the day. I have epsom salt baths with lavender. I buy the epsom salts in bulk from my local pharmacy. It just helps to relax me a bit in the evenings and maybe expel a bit of the toxic build up. Try just doing little, manageable things for your self . Make yourself meet a friend at a cafe to ensure you have to get dressed and go outside. Often when I walk out the door I feel better. It just feels a huge thing to get out the door. I often go and buy a pre cooked meal then make a nice salad and I don't feel like such a failure of a wife. You don't need to do big things to feel normal.
What I find the most helpful is to book my physiotherapist appointment and a myofascial release on different days. It makes me get out of bed and they are both very empathetic. I make myself do things like having a friend around to drink tea (and eat cake!). Little things just keep me from spending hours under the duvet. The pain and the medication roller coaster is exhausting.
I feel bad because my husband is very motivated and active and I feel like a big lump.
I am rattling on and my pests are demanding food.
Have a good weekend darling, know that their are others out there far too attached to their pjs too!
I meant to add although I manage to get dressed most days, even the effort of washing my hair becomes a dread. I found a cheap but nice hairdresser to have a wash and blow-dry and that makes me feel a bit more human and a bit less of a couch potatoe. Look after your self and you will be a happier wife. I am paranoid my husband is ashamed of me to, but I am sure they aren't. Ex
Hi Sue, I just wanted to say that I have come accross your email and feel for you because I am very similar. I have gone through many days where I cannot get dressed and just want to cry. My psychiatrist and psychologist all say that I am only depressed because of the chronic pain and health conditions that cannot be cured, that I feel trapped. They think my despair is understandable and so is yours. However, I believe your life will improve, there are lots of us other there suffering and we must support each other and get through it! However, although my endometriosis is now uncurable (4 failed operations) I am living in hope that I will find a cure for my pelvic floor dysfunction and pudendal neuralgia! All thanks to the people on this website. I do have anxiety that I will lose my job through my health problems and then if I was on disability they wouldn;'t pay my mortgage and I would lose my house. I am divorced so no hubby to help unfortunatley, my illness took a toll on our marriage. These things make it harder not to get anxiety over health problems! I am sure you also have challenges in your life that make it harder to cope but you will get there. I hope you are feeling much better by the time you read this message. You are not alone
Thank you so much for taking the time to reach out to me, and others this morning.
I have been reading your messages and you sound so lovely. What a wonderful warm and caring site this is.
Our situations appear to be very similar indeed.
I was sorry to read about your marriage breakdown. We went through a very rough patch, well a very rocky patch, but with counselling we survived. It is not easy though. I did lose my job, I was a teacher but after 9 years of working with increasing pain, and then incontinence, followed by several absences, I was put in a position whereby I could no longer carry on.
I sincerely hope for you the same as you hoped for me!! Support from this site, an answer to your pelvic and pudendal nerve problems, and a brighter outlook for the future.
Let's keep in touch, especially if we find anything that is helpful.
Hi I didn't see this message, you are so sweet! I have started physio privately (not easy to afford!) and it is quite a stress travelling to see her every week but I must try. I am still holding down a job somehow but I have my own office and if I feel really ill I can take a break, luckily, however when the pain is bad I have time off and I am on sickness monitoring so it is not easy. I feel for you, after losing your job. I couldn't survive I would end up in some awful flat somewhere probably if I lost my job, my partner doesn't have the money to support me yet but he is working on it lol. I have been diagnosed with pudendal neuralgia now and I am waiting for nerve blocks, but I beleive physiotherapy is the key as she has found so many things to work on. I hope anyway, to be honest I don't really beleive it will work sometimes because I am depressed, but on the other hand I think "yes it may actually work" because she knows what she is doing unlike some doctors I have seen.
I have had good luck with Baclofen 10 mg 3 times a day combined with 5mg of Valium and 300 mg of Gabapentin 3 times a day (all at the same time). Plus I take Effexor XR 75 mgs in the morning. Thank Goodness I don't seems to have the awful symptoms that some women have.
I had a terrible headache and nausea and heart palpatations in the first week I went on Baclofen but in case some of it was a bug, I might try again at a later date as it seem to help a lot of people. Gosh we have awful cocktails each day don't we. I can't believe I buy organic food and take all these awful drugs. Thats pain for you!
Hi, your not desperate, your proactive and you have to be.I have two young kids as well. I have chronic pelvic pain caused by hypersensitive nerves and muscle pain as a result.it has been crippling at times. My pain control regimen, feel free to discuss any of these meds with a doctor before trying them of course, is 45 mgs nortriptyline, 10 mgs flexaril, a muscle relaxer taken before bed and a life saver, 1 mg xanax in the morning, tramadol for major flare up only, also magnesium supplement one a day, I have had less flares since taking this supplement. Eat a high protein healthy diet, lots of water, stretching tight muscles,walking, plenty of distraction which you have since you have kids. All this has made my life livable again when at a time I thought the pain would kill me. And heavily research your condition.be knowledgeable. Good luck.lisa
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