Well unfortunately the RFN i recently underwent has not been successful in improving my condition, albeit there was a small reduction in pain levels in sacral area, after discussion and review on Tuesday. The lower leg neupathic pain has since become a permanent and severely painful unwanted issue which is driving me insane, and my left foot is becoming a tripping hazard because of its inversion. Lifting my left leg off the bed during examination is nigh impossible and causes intense pain to shoot all the way up the back of my legs into my buttocks and back.
So came away feeling very disheartened even though we were pessimistic about it being successful, we still had hope that we could dispose of the thought of going down the path of a nuerostimulater.
So now we are going to focus on the SI joints, which will mean waiting for permission to be granted.
In the meantime my specialist has requested that my GP change me over from the twice daily dosage of 300mg Lyrica to Neurotin in the hope that it will help with the neuropathic pain better and allow me the chance to hopefully shed the extra 23 kg that has been gained from the Lyrica and which is putting more pressure on my lower back.
He has also requested that i undergo nerve conduction tests , and supports the podiatrist in having a orthotic brace to hold my foot in the right alignment to prevent me tripping/falling which has become a big risk and has occurred already quite often , especially if i am tired.
Am feeling overwhelmed with the thought of having to deal with all the paperwork involved to get permission , and the pain and loss of mobility is getting me down . Standing and walking is extremely painful as with every step the pain shoots up from my heels all the way into buttocks and lower back. And although i try and consciously rotate my foot outwards its a battle. We will be concentrating on strengthening exercises while we are waiting
Has anyone got any advice on the swopping over process from Lyrica to Neurotin ?and also about nerve conduction tests
Sorry for sounding so negative, but it feels like the glimmer of hope is diminishing
Mrs Shingles,
When you go to Orthopedics they will give you a generic one to start with, they will make a cast of your leg and foot, just like having a broken leg, they cut it off and use it to make a custom splint, you can have whatever colour you like, I chose black, it is also hinged at the bottom, so the foot piece is attached to the leg pieces by two strong plastic spring material, this allows your ankle to bend when you walk, doesn't affect it's ability to hold the foot up, shoes are a bit of a problem, sneakers you have to remove the cushioning. I also wear an ankle brace as well to help with the edema, otherwise it gets too tight and circulation gets cut.
Don
I'm really sorry to hear that MrsS. It is so disheartening when treatment doesn't give the relief that was hoped for.
Sorry to hear you are still having so many problems Mrs. S. I hope that the change in medication will help you with the weight issues and maybe your pain levels too.
We can't offer you advice about changing medications here. You need to do this under your doctor's supervision. I am sure that he/she has done this before and knows how best to handle it. You can't just swap as far as I know.
I hope that things improve with this and that the foot brace helps with your walking issues.
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Im really sorry to hear things arent going well.
I will pray for you.
Hope you feel better soon.
I'm sorry to hear you're going through such a continual, crappy time of it Mrs S. 🙁
Something to help you smile... xo
Hi All,
I sat down with my GP last week and we worked out a plan to switch over to Nerontin, while slowly decreasing the Lyrica. I have worked up to a base of 300mg Neurotin tds and shall be slowly increasing it until a good control on the nerve pain can be hopefully be achieved. Just to get some decent sleep instead of the 2 hours or less every 3 days will help so much in coping better with the continual pain.
I am feeling a huge sense of relief after receiving permission to day from the insurer to proceed with the bilateral SI joint injections without needing to go to conciliation which is wonderful. I have decided to try and avoid getting my hopes up that this will be successful, after experiencing the severe disappointment after the RFN, so that i dont plummet to the depths of despair as i did then.
Yesterday was a big day out with two medical appointments and by the time i grabbed a few groceries i had hit the wall, and spent the night awake in and out of the recliner dealing with pain flare and a lower leg that alternated painful heat , nerves burning and stabbing and terrible muscle cramps. So today was spent resting up at home with the barest levels of activity, and tomorrow will be the same.
Hope everyone has had some respite from their pain levels today
I hope that the Neurontin is helpful for you Mrs. S. I don't know much about SI injections but good luck!
Is there anything else you can do that will help to make life a tad easier for you. I know you are in a rural area, but does your supermarket do deliveries? That would remove some of the physical load from you. Is there anyone else at home who can cook occasionally - or when you are at your worst? I know that dinner time is often the worst part of the day for me and I have had to work around that by pre-preparing meals and having them in the freezer. My husband has taught himself to make the best veggie soup that I have ever tasted. It has every conceivable vegetable in it and it is super thick. We usually have that at lunch time, so even if we end up with a makeshift meal at dinner time occasionally, we have already had an extremely nutritious meal at lunch time. We often have the soup at dinner time on a Sunday night instead of lunchtime.
We don't eat it every day, but during the Winter it is certainly a big part of our diet. He had never cooked anything much before, so it is a really big triumph for him. He also makes an Asian stir fry occasionally and that helps too.
Failing that, if you feel you are unable to cook, the odd take away may be of help. I got smart and overdid the walk yesterday and we had to resort to takeaway 🙂
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Hi Mary, sorry it has taken me so long to reply. The change over in medication has knocked me around mentally and physically and i am extremely sleep deprived as i am only averaging a few hours sleep every 3-4 days which is making life difficult. I havent been driving because of the dangerous lack of sleep, but am trying to avoid the use of sleeping tablets as i am already on too much medication.
I am slowly increasing the Neurontin, but have been stuck spending the long nights in the recliner as the bed is too painful again. Hoping that the side effects will start to ease, but i realise that having been on the very high doses of Lyrica for almost two years means that withdrawal was to be expected. My beautiful ragdoll Mishka has been keeping me company through the long nights, as reading and the computer have been beyond me.
I am very lucky in that my local supermarket staff are so helpful in that they will grab me a small trolley from the carpark if there are none in store and there is always someone to help take the full trolley to the car and put my shopping in when pain prevents me. The prices are a little dearer than going out of town , but the help and convenience enable me to do the shopping most of the time which makes me feel useful.Hubby and daughter usually put it away for me when i get home. And i am blessed that hubby is a very capable cook and a much better housekeeper than and is happy to do it when i am not up to it. I am very grateful to have them around, as i know there are many others who dont have a lot of support. If not for them i honestly dont think i would still be here.
I am now booked in on the 15th October for the SI joint injections which is great news and still trying to organize the nerve conduction tests which look like being at least 2 months away as the waiting list is incredible. The results of my impairment benefit levels assessmemts came through which were incredibly disappointing and we are still considering appealing as they are laughable considering the quality of life i have been reduced to.
I am looking forward to my first pilates one on one session tomorrow which i am sure help me to start working on regaining some core strength, although i havent been up to doing much on my reclining exercise bike because of the pain levels. Just walking around the house is a battle.
Its so frustrating to see how many unfinished jobs i have started to do around the house, but which pain prevents me from completing.
Hope everyone has a better day today
Hi Mrs. S.
I am sorry that you are still not sleeping. Lack of sleep will not help as sleep is so restorative. Is your doctor happy for you to use a sleeping pill occasionally just to give you a break? These nights of broken sleep can be like an alarm clock and just keep on keeping on. If you can use medication just for a night or two it may help you.
I am not a doctor, but I would question you starting Pilates at this point. You don't seem to be in any condition to be starting that type of exercise. I would have thought that gentle movement just for a few minutes a day - maybe even in water would be more suitable. Regaining core strength could be something that you tackle when your pain levels are a bit more under control. Jus a thought 🙂
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Hi Mary, my pilates treatment plan has been put aside as my osteo agreed with you in that my body is not up to being able to cope with pilates atm. So she has decided to try some cranial fascial therapy which we did a little of on Thursday last week which is extremely gentle.
I spoke with my pharmacist in regards to the severe diarrhea i was experiencing with the change to Neurontin and he gave me some important information that i had never been told before. Having been on Targin and yet still experiemcing severe constipation despite its anti constipating qualities, he was able to tell me that Lyrica itself can cause constipation in a small percentage of people, and that Neurontin can cause the opposite again in the sma percentage of people. Which makes much more sense to me when i look back at my history of IBS .
But on Thursday night i discovered a more sinister reason for my mental & physical symptoms over the past week, when Shingles pain began attacking my scalp and face. I spent the night with an ice pack trying to numb the agony that was causing even touching my hair strands to cause intense pain , and a spreading numbness across my cheek under my eye.
I had anti viral on hand from the 4 th episode 21/2 years ago which has left me with severe PHN , and had been told to start taking them at the first sign of the virus reactivating , which i did.
Friday morning after an agonizing night of brain zapping and red hot needles lancing my scalp & face i managed to get into a new dr, but the total lack of understanding of the basics of Shingles on her part , and the intense continuing pain had my normal gentle nature wanting to punch her.
Her only examination of me was to check my head, ignoring the presence of swollen painful glands under my chin and in neck,my around eye and cheek numbness on touch , my description and past experience and telling me off for wasting her time...as there was nothing to see, and that i should have only started the anti virals After the rash had errupted.!!
Needless to say i came away totally frustrated with her attitude, lack of knowledge, and her dismissal of my prior knowlege gained by having previousy suffered this condition multiple times and its lasting PHN effects even to this day.
Thankfully the rash has not yet erupted and the pain has eased off quite a bit although i am still unable to sleep unless i use valium ( and then only 4-6 hours achieved) & an ice pack is continually on my head . The glare sensitivity still remains and generally feeling very unwell, and extremely emotionally fragile. Praying that my quick action in starting the anti viral medication has saved me from getting another full blown outbreak .
But i am left feeling that there is nothing left in me emotionally and physically to cope with any more setbacks atm, as i am totally drained.
I feel for you Mrs. S. PHN can be the most debilitating condition and you seem to have the worst possible variety of it. Don't worry too much about the doctor - try and see a different one next time if you can. As anyone with a chronic condition of any sort knows - we are the managers. We are of course in consultation with our health care team, but when you think about it, we only spend a short period of time with them each year. The rest of the time, we are the managers.
Of course you knew that you had to start the anti-vitals early. You have been living with this for a long time now and you would know from past experience the best thing to do. I actually put myself on some antibiotics just before we went on holiday a couple of months ago. I was worried that I would develop a chest infection because of my past history. I had a course there ready to take away, so I started them as soon as I became unwell. I saw my doctor a couple of days later and she said I had done the right thing given the circumstances. I am not sure what sort of reaction I would have got from a strange doctor though. You may just have been unlucky.
The main thing is that it is settling down and you are getting a little sleep. I think that the stress of everything is actually compounding your problems at the moment. Do you have a psychologist who you can speak with. Maybe a refresher course in the relaxation strategies might help too?? Just some ideas. Or there is always the live in pain clinic that I mentioned. I am not sure if there is one in your state but it may be worth investigating,
Let me know.
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
I am very lucky to have a psychologist who has spent 20+ years working in pain management and saw him straight after the dr appointment. We are concentrating on trying to get my stress levels down , but i am unable to tolerate noise at the moment so have been currently unable to listen to my relaxation cd that he made me shortly after the accident. I agree totally that the stress of dealing with the wc system , combined with the long drawn out legal case with the convicted driver has definitely compounded my pain levels. I am concentrating on trying to relax and deep breath and lower the tension levels which only increase the pain levels.
I am so glad that your Dr supported your decision to start the antibiotics. And thank you for your kind words and validation. Sometimes we cannot help but doubt what we do for ourselves even though as you so wisely said...we are the ones who have to manage our conditions and live with the pain as best we can.
My dear MIL popped round to see me this morning to see how i was as i couldnt go to the family gathering yesterday. She kindly offered to send me away for a week to a health farm if it would help me by getting away and having some pampering, and i struggled to explain to her that although i deeply appreciated her thoughtfulness, i could not risk someone else working on my body who doesnt understand my chronic conditions, as they could actually worsen my situation. She so hates to see me like this and just wants me to "get better" and cant understand why i have been this way for so long now since the accident. Its difficult and frustrating for me to try to help her understand that getting better is not something that will magically happen , i have given her the chronic pain letter in the past to read but she is still no closer to understanding 🙁
I was having this discussion with someone a few days ago. No, it's impossible for anyone to understand unless they have experienced it themselves.
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
To add to that Mary even people who have had acute pain, don't truly understand, yes they had bad pain for a while, but they healed, we don't, and we don't get any respite, they don't understand the long term effects it has, or that it can spread, nor do they go without sleep for days on end, or the depressive states we find ourselves in, or the bad days that have a mind of their own, making pain that much worse when you thought you had control, so no they will never understand unless they experience chronic pain, but saying that I wouldn't wish it on anyone, no scrap that, maybe politicians, so they get services we desperately need up and running and funded better.
Don
