Please may I stay connected to this group for support as pain and weakness are with me every day?
Posted , 4 users are following.
I found it so comforting to have the support of this group. I am conscious that I have not supported anyone else's discussion. This may be because I am not in a proper position of acceptance with my own. Does anyone else feel like that? Still in pursuit of improvement... or maybe able to accept things as they are whilst still searching and trying to improve?
I frequently question myself....
Should I take a low dose of Pregabalin or Gabapentin as suggested by the GP even though my pain leaves me during the night (usually) and even sometimes when off my feet during the day?
Should I go and pay for a second MRI on my lumbar back even though the last one was done less than 2 years ago? The GP would refer me again via the NHS into MCAS to await a physio assessment after which I get sent either to a consultant or for more physio...but 12 week wait for that initial assessment ? My GP gid say I would, most likely, not be granted another scan.
Should I go and pay for a private MRI on my hip, even though I never thought I had a hip problem before...but I do experience a weak leg which feels almost like it is leaning out of the socket when sitting especially...but then could this be caused by my own diagnosis of nerve damage in my back (which the back consultant called impingement, 3 years of it).
Should I search maybe on another part of the Patient site? I am up to page 6 of the Spinal Problems community forum bit but can't still find anyone's symptoms to match or come that close to mine. It is the aloneness and the mystery of the symptoms which, sadly, might make me observe them more in an attempt to understand and I know this is the worst thing you can do for nerves. Someone else might say - "Just try to get on with your life" as a way of closing the Pain Gate (and maybe also the weakness gate! I more or less gave up my job as a Supply Teacher at 56 years old after the shock of having my kidney taken. It was a stressful job. I have done bits and pieces of distracting little jobs since but they are harder to come by and walking to venues and/ or pain might get in my way of big commitments. I do busy myself a bit each day with people but am committed to nothing. The only commitment is my aged mother who is needy about her own health whilst being totally disinterested in mine. (Yes I do feel resentment).
I have a good husband but he is out at work. He listens but how much can one other person take?
Thank you for "listening". I am not necessarily asking for answers. It helps me to feel supported. However any gems of wisdom would be much appreciated.
0 likes, 15 replies
connie07899 elaine_10691
Posted
i have had weak legs for 2 years. I WAS ON GABAPENTIN for 1 1/2 years. it made me very depressed. Did not help weakness. I gained 30 lbs from fluid retention and it made my heart best faster. I have seen many specialists and have had 4 mris. mris were not bad I cannot walk or even sit as my weakness has spread to my upper back and neck. My doctor suggested i was imagining it. She even told other specialists possibly i was imagining it. No one would help me. I kept seeing doctors and now a specialist thinks i may have some form of arthritis. I sure wish i new this 2 years ago i would have had a better chance of not losing function.
Dont give up keep looking for an answer. Have you tried warm water therapy. I did it years ago for back issue and it was amazing for improving strength without pain. Good luck.
elaine_10691 connie07899
Posted
Thank you Connie,
Yes, I have also read some bad reports on Gabapentin/Pregabalin. I hate taking medication especially now that I have chronic kidney disease due to the romoval of a kidney which proved not to be cancerous after all. So all meds have to be checked against my kidney...and certainly won't do it any good. I even don't drink very much alcohol now and limit my salt intake, eat healthy stuff without much sugar - It is the only way I can have some control. However, if I believed the drugs worked for my sort of thing I'd chance the detriment to my kidney. I know 2 people who are on it for the management of pain but not pain which has been going on years like mine (which I understand gets a bit imprinted into your nervous system and brain). Also...if it doesn't help the weakness too, I think, what is the point - I'm trying to be as active as I can to stay as strong as possible. Something inside me says that if the weakness was better I might try to push through the pain gradually. The weakness is the scariest thing as muscles feel as though they are not firing and it scares me if this continues to happen more and more.
I am so sorry too for what you have been through. When no-one will help or blanks you despite you your best efforts to improve you feel so lost. If it is some form of arthritis for you you must gradually press on tiny step by tiny step to gain strength. Amid all that there is weakness (and pain) but that is going to be there anyway.
The warm water certainly helps my foot/feet as does any warmth. I bought a big special foot bucket mainly for the winter. Also I have 2 small square heated pads - just like mini electric (under)blankets which will switch off on a timer, one under the dining room table for the winter and the other in the bed. If I wake up with ominous cold feet I can switch it on and forget about it or I can put it under my back. It is a little gentle luxury -made by Sweetdreams...about 10 by 16 inches only. I will try the baths again though too.
pippa58442 elaine_10691
Posted
I wouldn't bother with any more tests or medications. The medications suggested can cause very nasty effects. I have come and go neuralgia, so for me it's not worth taking anything for the pain when it flares.I went through the phase of looking for improvements but quickly gave up when I found there was nothing on offer from my doctor that was risk free. I chose to accept my condition and treat it naturally with heat. As soon as I accepted there was no cure for neuropathy, I felt better able to handle my symptoms.
elaine_10691 pippa58442
Posted
Thanks Pippa,
You are lucky that you have come and go neuralgia. I read on one of the other discussions (whilst searching for answers or clues) that you feel better when you go away to Italy in the summer. That sounds like a perfect solution for you. Sadly, for me, planning holidays has become difficult as I find it hard to get about comfortably, unless on a bike (for a while) so there is no joy in exploring a new place. I used to be so active. I am grieving for that past me which was about 5 years ago. Interesting also that you mention heat to be good. This is good for me so long as I'm not getting that burning pain.
pippa58442 elaine_10691
Posted
I have also noticed that despite the onset of cold, wet weather,my neuralgia has not flared up for weeks. This is strange because normally the cold weather sets it off.
elaine_10691 pippa58442
Posted
Pippa,
That is really hopeful news. More of that for you will be wonderful!
I press on knowing that arthritis, at least in my foot, is part of my problem. I have spent more than a year being unable to place my foot down correctly -not due to pain really but due to lack of muscular function. Walking more only made the pain in the wrong places increase. I have been trying to release the 5 year old scar tissue in my tummy which seems to be tightening my hip...and continuing with the exercises I always do. I am more often getting a better placement of my foot where the tripod of balance is being used more(have been relying mostly on only 2 areas!). If I feel pain in my foot whilst walking better I feel better and more positive about that as I am using better balance for my joints. Sadly this isn't always and I am still getting varying degrees of back pain (on alternate days?!)
pippa58442 elaine_10691
Posted
Have you asked your doctor if you can release your scar tissue yourself with exercise? It might be worthwhile asking for advice on that.
elaine_10691 pippa58442
Posted
I presume that exercise on it's own would not release scar tissue...as it it would have done that before now. I did mention that I'd been leaning on the soft ball and even tried the harder ball in places in order to try to stretch it (In physio terms this sort of thing is called foam rolling I think) and she didn't say that was a bad idea or to stop doing it. She did acknowledge that the scar tissue might be restricting my hip (which I deduce may have long term affected my back).
Eating my yesterday words a bit today. Nerve pain across back of inner side of thigh through leg to between my first and second toe. Went to my painting group. Think sitting too long is bad for it...but then so is standing too long. Walking also a problem but more manageable than the rest in short doses.
Met a friend there who has had a benign benign brain tumour removed and was prescribed Gabapentin not that long after operations. She says it helps her and was urging me to consider it. I wonder if it works better for people for whom the pain has not set in after many years? Was searching on line for that answer. Did come across lots of bad reviews for Gabapentin and Pregabalin mixed in with a few good ones. It scares me but my pain and weakness confuses and scares me also.
pippa58442 elaine_10691
Posted
I would be very careful about considering any of these medications. Everyone reacts differently to treatments. Some benefit from them but have to undergo horrendous side effects including withdrawal problems. Some only get side effects and no benefits. Others chose to tolerate adverse reactions if they are getting relief of pain.
I would try to live with your symptoms without any medications and continue with your exercise routine if you feel it is helping. You have seen only a few good reviews for Gabapentin but many more bad ones. The sheer number of bad reviews would scare me more than my pain to be honest and would influence me to stay away from these medications. You will have to weigh these things up yourself to see which of these options scares you more. The one that scares you most, you should avoid. This decision is different for everyone. You will have to base your decision on that because you will hear many conflicting stories from other people which will confuse you.Your decision is the most important.
My neuropathy no longer scares me because I have had it for so long; that's why I am able to live with it. I live a normal life and my fear is that nerve drugs will put an end to that.
elaine_10691 pippa58442
Posted
Thanks Pippa,
I have such variability of symptoms each day...but which can often be somewhat predicted. Pain or weakness can still feel more troublesome some days more than others(but never leaves me in my waking hours). Now that my gait seems somewhat improved, if someone could honestly tell me I was not damaging things more...and this was the result of nerve damage or impingement where the cause is largely gone, I think I could accept more. I live in that cautious scared state, constantly trying to improve things the best I can by maintaining some strength and distracting with activities I like. There are emotional pains in my life to do with my childhood family members still alive and I do feel powerless to change them. I intermittently see a psychotherapist/counsellor and it helps a little but I feel unable to break free of the painful connection I feel, to be able to engage with the people who cause me hurt, whilst disconnecting emotionally. I know these sorts of things affect a person's pain. I have a good husband and and a lovely adult son and feel lucky to have them. It is the family from childhood which causes me pain. How does this pain affect a person's physical pain? Certainly can't be helpful.
pippa58442 elaine_10691
Posted
Maybe it would be better to avoid the family members who upset you and don't try to engage with them. It may also better to stop trying to constantly look for improvements because this is causing you stress. I would try to accept your symptoms and manage them with doing the things you enjoy to distract yourself from your pain. I stressed about trying to find treatments for my neuralgia and the more nothing worked, the more anxious I became. However, when I decided to accept my symptoms, stop looking for permanent solutions which do not exist and concentrate on short term treatments such as heat, I found that worked even though temporarily. I decided to accept this was the best I could do and my anxiety got better and my symptoms are manageable
elaine_10691 pippa58442
Posted
That's helpful Pippa, thank you,
Think I'm finally accepting that am dealing with a narcissist in one family member, maybe both. Narcissists can make you believe that you are the problem and consequently doubt yourself. It is difficult to shake it off and the feelings of guilt remain when you avoid them. I have to keep up the kind self talk and remember I don't feel hurt for no reason. Also narcissists won't discuss it because they cannot have it suggested to them that they are wrong or hurtful to anyone because, in their mind, they are wholly right.
I need a way of getting on with my life where I can accept the limitations in my walking. I haven't found it yet but hopefully I remain open to opportunity. My life has got into being worked around pain and weakness. Doing physical exercise (of other types) is my way of trying not to go back to a weaker time (maybe a year ago), to prove to myself that my body works in some way and it helps me to sleep more soundly (thereby not lying awake worrying).
As you can see, I've got a long way to go. Maybe I should get on another thread to do with anxiety or depression as well!
On another note I began properly the Cannabis oil called Canabidol a couple of days ago, having only used it for one off bad pain before(didn't work). Someone told me you have to take it twice a day and regularly to get it in to your system. I'm on no other meds so I'm going to see. Nothing lost except lots of money!!!
pippa58442 elaine_10691
Posted
I have had this problem with narcissists too who leave you feeling unvalidated and humiliated. The trouble comes in various guises that you sometimes don't expect. Being autistic can make it very difficult for me to process. Sometimes, when you start to get anxious and depressed about their behaviour, it can actually cause aches and pains too which can make preexisting joint conditions a lot worse.
elaine_10691 pippa58442
Posted
Hi Pippa,
You clearly have had hurdles in your own life to overcome. Thank you for understanding my narcissist problem and the relationship it bears upon my health. It clearly isn't the cause but, yes, it compounds the problem immensely. I'm getting some new paintings started as the concentration upon what I enjoy soothes me. It is all good as long as I don't sit too long. I'm going to cycle later to my ukulele group. The cycling refreshes me. I like the ukulele playing too but the sitting can cause me pain. I'm not so good at playing yet so I think I tense up more (maybe? Who knows why?!).
Hope your day is acceptably pleasant.
pippa58442 elaine_10691
Posted
That's good that hobbies soothe you. Hope you have many more good days.