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Spotlight: Pain Awareness

  • By caya1430

    I certainly appreciate the wonderful articles regarding pain awareness. I relate to many of the symptoms others write about. Yes, it is frustrating! Yes, chronic pain can change a person! Absolutely changed me. I have great family support and an awesome husband. He is my hero for always going above and beyond. I feel guilt for just being “mush” sometimes, being alone in my bedroom when I need to be left alone to recover. Ugh 😑 I try to stay positive but it’s so difficult. Thank you again for posting informative articles.

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    • By Kelly McNamara Keymaster

      Hi Caya. Thanks for posting in the Pain Awareness forum and for all your kind words! Sounds like you have a great support system in your family and husband. Sometimes staying positive can be so difficult but know you’re not alone and the community is always here. – Kelly, MultipleSclerosis.net Team Member

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  • By itasara

    I can’t say that I contribute pain to MS. I really can’t say I have
    a lot of pain anyway. I’m 69 years old and once in a while I have a pain from somewhere or other but I can’t say it’s MS or aging or osteoporosis perhaps. I was having a lot of pain from my HRT medication. I came off of it and now I’m miserable without it so I may go back on it only taper it and see what happens. That was real pain but it wasn’t from MS. If it comes back and I guess I have to come off it for good.I don’t know what MS pains other people have but pain has so many origins how can one even say if it’s just from MSor some other neurological problem or from any other problem. Overall I can’t say I have much pain at all. I do have occasional back pain but I do sit around a lot I’m also getting older and I had some deterioration in my DEXA scan on my spine. When I first came down with MS, the first big symptom I had was transverse myelitis. And even with that I had no pain I had numbness in my body and feet. The only other symptom I had for maybe a few years before I was diagnosed were MS hugs. And I had no idea what they were and neither did my internist. And I guess for some those can be very painful. With medication I don’t get them very often and when I do I guess you could call that painful but it’s not enough to say that I’m in pain. I just wait till it’s over and then whichtakes maybe a few seconds up to a few minutes and it’s more of a crushing sensation that it is painful sensation

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    • By Stephanie

      I get MS hugs as well, and for me they are painful! I feel like someone is crushing my abdomen!! They are an 8-9 typically, but thankfully they come and go. My neurologist doesn’t treat me for the pain and that is where I get frustrated!! A friend of mine has gone to see an MS specialist and I’m thinking about going to see him as well! Maybe that will help.

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  • By Annie1

    I’ve had pain – the every single day stabbing migraine type – right side of head, neck and entire upper back since I was diagnosed shortly after my 18 year old college freshman was born. In fact, the pain is what led to the MRI to diagnose the MS at UCSF by a leading researcher that I was fortunate to be put in contact with through a friend of my dad’s. Now I am with Stanford health care as of the new year (we were with Kaiser for 6; a huge mistake, frankly). At Stanford the my doctor at the neurology clinic has diagnosed me with chronic migraine, of which I am getting Botox shots for – the third treatment is in 3 weeks. This is separate from the MS, that doctor and her fellow have decided and I go to the MS clinic for the MS. My spine is involved from neck to past my waist now however; this does happen I believe, when I’m having an exacerbation. What do i do? I meditate before leaving my bed most mornings; if I’m not sleep well, I meditate when I’m awake at night – or write…do I cry some of those very painful early mornings? Yes! It sucks! Nobody should have to live like this! Is my partner there for me? Yes – mostly – and he brings me breakfast and my supplements before leaving for his busy job. Then I swim – or just get into the water if I don’t feel good enough to swim. If that works a little I garden a bit or begin my writing for the day. I’m reading and following the book – Writing as a Way of Healing right now. I do have a medical cannibas card from the state of CA…I use a CBD vape and they do work well for pain. I exercise if I’m better than an 8 usually. I have found that even if it’s painful, it’s a necessity. I have an elliptical machine at home. I’ve done yoga for 4 1/2 years now as well. Yin yoga is great for pain and knots…there is a lot on Youtube including yoga for MS videos. My favorite is Yoga with Adriene; she’s awesome. I’ve always been active and love hiking the hills around our neighborhood or riding bikes with my husband. Can I always do those activities lately? No. We’ve learned to be flexible and I’ve been convinced by my husband and 3 kids that this is ok…my kids tell me I’m the bravest person they know.

    Are there days when these measures put together do not work? Of course! – that is when I say, around 5PM: If all else fails, nothing can beat a good IPA…or two.

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  • By itasara

    I get advertisements now for this over-the-counter cannabis
    oil. Has anybody tried this to see if it helps. They say it’s not something that gives one a high. Curious about this.

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  • By dawn74

    I’ve never been diagnosed.
    I’ve been looking for answers for two months now.
    Some of my symptoms I’ve had for over five years I just learned to live with.
    I haven’t been able to work in over a week.
    Two months ago my pain became so severe I was left no choice but to get help
    I’ve seen orthodontist
    They said even though I have bulging discs and stuff it’s all normal for my age
    Should not be in this much much pain
    Back to symptoms
    I am so weak I can barely walk
    I mean lift my legs like weights are in them
    My arms and legs get so weak when I’m up for a few minutes it’s ridiculous
    My neck is stiff like knots in it
    I’ve had balance problems for years being pulled to sides, running into doorways stumbling
    Dizzy everytime I get up
    Dizzy spells are worse in spells
    Sometimes I feel like I have to pee but can’t tell if I’m going then get up and I’m still going
    Or I can’t go
    I’m supper emotional
    I know this is not the right place to put this but I am desperate for answers
    Any advice please???

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    • By Meagan Heidelberg Moderator

      Hi Dawn74 –
      Thank you for sharing with us and our community. It sounds as though you may need to see a neurologist about the symptoms you’re experiencing, as they will certainly be able to provide you with appropriate answers. We, unfortunately, are not able to provide any medical advice, for your safety, but we do want you to know we are here for you throughout your journey! Please feel free to browse our site for the many articles regarding man of the symptoms you’ve described.

      We are certainly thinking of you through this difficult time. Please know that you’re never alone here!

      Meagan, MultipleSclerosis.net Team Member

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  • By 26g45qt

    I had finally gotten my MS pain under reasonable control enough to function at a reasonable level when along comes the new laws and the “opioid epidemic” that has made life unbearable once again. And I’m exhausted just trying to get a simple non opiate anxiety prescription refilled every 30 Days. My mother became recently ill and I had to go out of state and be without any meds because of these new restrictions! DMT side effects can be much more dangerous, this non treatment of pain for patients with incurable diseases is getting cruel. Between scared doctors, power tripping politicians, new law making pharmacies, and insurance companies, we are getting forgotten.

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  • By itasara

    I don’t know that DMT are much more dangerous the opiod addition but I know they can be severe for many in both cases. However the new laws sometime by pass patients who really need pain medication in some situations. When my son had his 4 wisdom teeth removed he got a script for tylenol and NO antibiotic. The tylenol didn’t touch the pain he had and a day or so later he was terribly infected and in terrible pain and couldn’t reach any one to help him out. We, his parents, hired another dental surgeon, who gave him the pain medication and antibiotics he needed which he should have received in the first place. Because he originally went to a clinic at a reputable university it was assumed he could become addicted if he got a strong pain killer and that was an assumption that should not have been made in my opinion.

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  • By Happy Go Lucky

    I have been diagnosed with MS twenty years, and for the longest time, I really couldn’t say that I had much pain, but now I do. There are days that end with some sort of lowgrade pain all over, it burns a little. The worst is the cramping from spasticity. Neurontin has made a big difference, but I don’t take it during the day. I can’t really function well with it and I don’t care to be spaced out. I like to be as active as I can. My neurologist recently doubled my dose, because my original dose was very low. I don’t rely on medication alone. I also receive Physical Therapy and stretch several times a week. PT has been so great for me. A tiger tail roller helps as well. You can order them online. a heated massager can help. It just depends on the type of pain.

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  • By mrsaristotle

    Hi I am from the UK. First symptom went blind in 2000 on holiday, it took until 2016 with lots of stuff in between and tests to finally get told “sorry you have progressive MS”, THE final test positive was another VEP which was positive again for ON, i had one in 2007 positive for bilateral ON. I have just had another bout of it before xmas after loosing my husband in October.

    Pain in MS. Well for me it was controllable by using CBT my own kind. I run a group on facebook, i kept bantam chickens well my husband and I did, and I used to hatch rare breeds for people to keep me active and my mind of my nerve pain. I tried every way i could to keep on my legs. My doctor said if you dont use your legs Maria you will loose your legs, so it stuck with me. No matter how hard it was or how much it tired me out i would walk around the house and garden tending to my little flock.

    I took my dog out every morning on my scooter as i have trained her to walk besides me.

    Since i suddenly lost my beloved husband and care giver in October my pain has gone out of the window, the levels are just all over the place. I have lost interested in my birds, half have been re-homed now sadly. I only have a few left which get me up in the morning.

    The pain well its not like when you have broken a leg or have joint pain, its like the worse ever aftermath of the worse ever flu. The tingling and burning, fizzing, and buzzing and vibrations are sometimes on such a high level i swear you can hear them.

    Its mainly in my lower limbs down from back and my left side is effected more. I have very weak left side leg now but the pain in my left foot some days i could chop it off. One of my toes is permanently stuck in a spasm which makes it hard to walk. I was falling a lot in the garden as it had too much stuff in there, but its all been redone now at a huge cost but it is now safe for me.

    The pain is very odd, how can nerve pain be so painful? It is though but its weird. Sometime the noise in my head well i could scream with it to shut up buzzing, hissing, like bells almost like a steam outlet going off. If i get it loud boy I know its going to be a bad day.

    Even the fatigue is painful yeh I know how can fatigue be painful? I used to be active much more active, now i get to 10am and I am on my recliner just just resting. Yep everything buzzing, tingling, vibrating, prickling, itching you name it, and then the worse stabbing pains will just get me and I will YELP out loud like a little puppy who has had its tail pulled. It makes anyone in the room with me jump I can tell you, but when you have an evil genie sitting on your chest with a pin sticking you anywhere it feels like it every day, you kind of cant help but yelp out loud as boy it hurts

    I have had the worse pain in my shin front of it right side so bad it felt like someone had a knife stuck in it, for nearly 2 weeks I endured that. How did I cope with that? I did more then, got up, did a bit of gardening (i could then), took dog out (i could still walk then), I played games on facebook, i refused to let it get to me. I took no drugs what is the point. All the stuff they give you for MS nerve pain is designed for depression and anxiety they only found out by error that it helped nerve pain, but sadly everyone i tried turned me into a zombie which made it impossible to do anything so i decided to go naked and take nothing.

    The pain in my shin was the worse i have had I think. My doctor felt sorry for me, and ordered me a blanket cage. I use it even now in my bed, it keeps the heavy covers off my legs which were making me hot which made the stabbing worse.

    Finally that pain went phew…just like that.

    MS sure keeps us on our toes. I can have the worse night and the best day, and the best night and the worse day. The pain however, is ALWAYS with me, but on different levels.

    My coping is to do things i run groups on facebook, watch funny old series which make me laugh, I help people on a bereavement group, I just do things in my head, which kind of shuts off the pain in my mind, yeh its still there but in the back ground.

    My doctor at the pain clinic said if you can manage without stuff do it as the stuff i can give you will just make you feel worse in the end, and i believe that as i have friends with MS who are wiped out all day with no motivation.

    I EAT well why i have no idea do i bother as i just feel like crawling into a cave and never getting out again until they find a cure, but i have my animals that need me, and my grown up daughters too, so i have to stay strong for them. I eat really well, my doctor told me my bloods are amazing. I eat fruit and vegetables and chicken and fish, never processed rubbish or too much sugar. My mother was Italian so i know how to eat well. I cut out the main sources of gluten, (which makes my legs burn), i am very very committed to eating well, and i keep a steady weight, without starving myself.

    I think diet plays a great part in MS to be honest. Keep internally healthy and it supports out auto immune system so we don’t get bothered with too many viruses and colds that can increase our core temperatures and give us an exacerbation of our pain. Oh yes HEAT is thy enemy. Having a shower for me is like running two marathons, i know when i have a shower i have to cancel TWO DAYS. It takes that long for me to recover and boy heat triggers off spasticity and cramp who wants that.

    The other horrible pain i get is my BLADDER oh joy how i hate my bladder. Constant painful UTI, and when not a UTI spasms in my bladder even down to vibrating so bad I could cry with it. Its a HORRIBLE sensation. Not vibrating in a good way either. UGH I hate my bladder. It was one of my other first symptoms.

    So yes pain well i think a lot of people get it, i know its called Dysesthesia. I have had it all, MS hug too i dont wear bras now as it made it worse. I have had such bad nerve pain in my left arm the doctor thought i was having a heart attack, heck so did I. Neuralgia it was called, then i got the shingles the pain of that was a piece of cake to some of the pain i had already experienced with my MS. I have had the dreaded Trigiminal Nerualgia too now that was the WORSE pain ever, and i have to say i actually had to take pain killers for that one.

    So I cope the best way i know how. I just don’t want to be drugged up, I convince myself if its neurological and mixed signals then its not really there so will go away and it always does just go away (well the worse pain does), the one i am left with all my life 247 unless I am asleep is the burning, prickling, and aching feeling in my legs worse in my left and the constant jabbing pain which can come from anywhere at anytime. 16 long years of it, getting worse now and my last bout of ON was really painful in my left eye but thankfully doesn’t last very long.

    To cope with the pain in MS I think we have to learn to attack it from different sides and try a mixture of things which suits us, not every treatment will suit everyone, as everyone with MS has it differently now that is another story with MS. Perhaps as there are different types of MS, RRMS, PPMS, and SPMS etc, each one has a different form of pain? Could that be possible, as when people talk about MS i AM assuming they are lumping all of them together. I know my PPMS is way different in some ways to my friends RRMS. Mine is mostly waist down, hers is more fatigue and cognifive not sure if that is classic to either but just an observation.

    I am blessed in a way though as I was given a very high threshold of pain.

    I remember falling once more down the stairs some years ago now before all this kicked off (no i wasnt drinking lol I dont), and i fell badly well actually I missed the penultimate step as i forgot to step down why i have no idea, and landed some how on my back. The ambulance guys thought i had broke my hip. They tried to put one of those things in my hand, “why are you doing that” I asked, “so we can put morphine in, oh no you dont I said”.” I dont want anything”.

    The xray showed i had fractured my coxic, the doctor was trying to push me to have pain killers could not believe i didnt want any. NO THANKS I said. (I had a very bad experience years prior with pain killers that is another story). I coped anyway and was back at work within a week sat on a rubber ring. I have broken both wrists another bad fall and was back typing in 2 weeks. I have a very high threshold so in a way i am lucky. Mind you like my hubby said maybe the reason i wasn’t taken so seriously to start with is because i give the impression i am coping way to WELL with things, so perhaps being a strong person with a high threshold for pain with MS is a curse after all and at 66 believe me I have had some really bad painful times in my life I have lived through.

    Thank you for letting me join this group. I hope I havent waffled on too long but this is one of my coping mechanisms writing. God bless you all. xxxxxxxxxx

    Now i have to spend half an hour checking my work and rewriting it a bit as i make so many mistakes now and add words that dont even make sense. See there you go I have taken nearly an hour to write all the above and check it, and i havent thought of my pain once. See it does work WAFFLING works for me lol. xx Ciao.

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  • By Carol

    I have had too much pain every day from the time I get up in the morning until I go to bed for I don’t know how many years. I exercise a couple of times a day and take a mild pain killer, which is not effective, but doctor won’t give me anything stronger. I try to keep busy or read just to take my mind off of the pain for just a little bit. I just finished another round of physical therapy. My fifth physical therapy. I definitely keep up with their exercises hoping that it might help. So far it hasn’t. I went to a pain management center many years ago. It worked the first couple of years and then it didn’t. Not much else I can say about my pain.

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  • By sheri1965

    I have had MS/Transverse Myelitis since 1997. I started early on with Baclofen first and adding Prednisone for inflammation, burning searing pain. I probably would have lost my mind we’re it not for these two medications. I went for two or three more years, working full time and doing very well, before the pain increased enough to go to a low dose of MS Contin. Over the years it was increased in very small increments until about 12 or so years ago when it seemed just right and I never had to increase it again. Now with all the new regulations I have decreased it and I don’t feel enough difference to be a problem. Unless I cause it myself and that’s usually the case. I go to a pain management specialist and we talk a lot about the feds and the changes. At my last visit, he started me on a topical treatment. I was blown away! Am I the only one that hasn’t heard of or tried it? Apparently he has prescribed it for a while because the nurse seemed surprised we hadn’t discussed it. Probably because my pain level is usually zero. No more than two because my regime worked well. Regardless, it really works! It’s a compounded formula mixed at their pharmacy. I didn’t ask or say anything at the time but it makes sense that the physician feels compelled to provide safe, effective pain relief that is within the federal prescribing laws. I’m probably the only person who hasn’t heard of it but I just had to say that there could be effective alternatives.
    I also feel compelled to say, as a medical professional, I absolutely understand where the fear comes from and intentions are good. It’s a painful and sensitive subject for me, but my mother passed away when she was 69; had severe PPMS and took quite high dose of morphine. Along with multiple antidepressants, antispasmodics, and others that she truly needed but should have been managed very strictly. She was one of the 5 % who had serious mental issues related to her MS. Including audio and visual hallucinations, paranoia and psychosis. She fought my dad over not taking control of her medications, even threatening divorce and reporting for abuse. At the end of her life, she had abnormal sleeping patterns and misused most of her medications because of her increasing delusions. I truly believe that when she passed away in her sleep, she probably just reached over on her nightstand and took something for pain. But there’s no way to know what she took or how many. The doctors gave up on helping her with MS and mental health. She couldn’t be admitted to a facility because she required total care. So she is a prime example of how medications can spiral into abuse and misuse, regardless of the absolute need for them. We all think we are competent adults and would never have problems being able to understand and manage medications. But life doesn’t always evolve the way we expect. We get older and sicker. It’s difficult but can be life and death so if you or a loved one show any signs of needing assistance with management of meds, get help. If they need to be locked up, do it. It’s so important and potentially deadly.

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  • By lightweaver

    I am not able to type much. Had MS for 25 years. Today every part body hurts and aches so am in bed hoping it is time to go to sleep tonight. Hate that pain has taken so much away from me. Times I take a Vicodin.

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  • By itasara

    Hi everyone, this is an update to the previous post I added here. I have now turned 70 and as far as my HRT medication goes I was so miserable for eight months and so I went back on it every other day. I have adjusted To that schedule, and after a couple months I have had no I have no more cramping or pain Or hot flashes or sleepless nights from being off HRT, and I feel like a person again. Other than that I finally had an MRI done after 12 years and there were still no active lesions although there may have been a few more and additional scarring. Now my neurologist has finally referred me to an MS specialist and I couldn’t get an appointment until the end of May. I also read another article online about how unnecessary it may be to keep on ms meds after age 60. I sent my neurologist that article and I’ll have to see with the MS specialist has to say about whether I should stay what I am or try another medication which I’m not sure I want to do or just come off medications. The problem is nobody really knows enough yet about MS to make serious recommendations. I read all kinds of articles I and listen to lectures abou MSv and read posts of individual patient and it’s amazing how different the advice is from their doctors, Their insu insurance companies who can make decisions for the doctand patients that is unfortunate.

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    • By Margot Keymaster

      Thank you so much for the update @itasara, I’m glad you’re feeling better. It’s great that you’re speaking with your neurologist about this – please keep us updated! It’s great to hear everyones’ stories since as you say they can often differ, though of course that can be frustrating when trying to find the best plan as well. Thinking of you. Best, Margot, MultipleSclerosis.net Team

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  • By rolly

    i have almost constant neuropathic pain in my legs, which i try to control with gabapentin (3 times a day). it does not take the pain away altogether, but at least it takes the edge off and makes it bearable. on most days, that is. on bad days it doesn’t seem to make a difference, although i can only imagine that without the pills, the pain would be even worse.
    then there is the muscle pain in my upper body (back/neck), which i experience on certain days. it’s annoying, but nowhere as bad as neuropathic pain.
    and occasionally i experience the ‘hug’, which is really scary. other than staying in a reclining position and taking deep breaths, nothing has helped. it’s just a matter of waiting it out.
    i envy those with ms who don’t know any pain associated with the condition. pain can make life a misery, but those who experience it have to try and manage it in the best way they can.

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  • By Anonymous

    My hugs feel like my bra is suddenly shrinking several sizes and squeezing in. It can last up to a half an hour and I just wait it out.

    In the morning trying to put pants on, my hips and thigh muscles feel like burning rusted metal. By the time I get that and my tee or sweat shirt on, I am exhausted and have to wait to do my hair.

    At night I will be woke up with spasms in my feet that go from my toes and work their way up the legs into my hips and lower back. I have tried increased magnesium and quinine over the years neither of which helped.

    At no particular time or day, I just get sharp electric shock feelings in my back; pain in my shoulders, neck, arms, low back, hips, legs, feet, like I strained muscles when I did nothing that would cause that.

    Things I have found that help me are to wear loose, soft stretchable clothing like sweat pants and shirts, leggings and tee shirts, and canvas deck shoes which actually helps with stabilizing me when I walk as well.

    I also take 650 milligrams of Tylenol (cannot take NSAID) before bed which 90% of the time will prevent me waking up in spasmodic lower body pain.

    There are other little things but these are the biggies. Hubby is a disabled veteran with osteoparesis, diabetic neuropathy and two failed knee replacements, so he is in much worse pain than I am, and that tends to put my focus a little off of myself and more towards him.

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