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Trying to find answers for my husband
9 Replies
LeahSylina - November 4

My husband has been in pain for...going on I'd guess 3 or more years now. We were married 3 1/2 years ago, and I know his complaints of pain started not long after that. Maybe he's been in mild pain longer than that, but I'd have to double check with him and he's sleeping now.

He ignored the pain until about 2 years ago, then started going to the doctor. Got lots of run around...oh you strained a muscle, oh it's from sitting at the computer all day (he works in IT for a living, so he's on the computer a lot). Here's some pills, here try physical therapy, here we'll check you for carpel tunnel - oh but you don't have that, your nerve conduction study was just fine.

The pain got worse at the beginning of last year, mostly in his neck and shoulder on the right side and he demanded an MRI. The doctor assured him he was positive it would show nothing (insert huge eye roll here) but low and behold he had a herniated disk. We thought PRAISE GOD, this is our answer! But within 2 months of his surgery for the herniated disk (done in May of this year), it was obvious the surgery did nothing and his pain has just been getting worse. The neurosurgeon did a repeat MRI, found nothing wrong, told him to try acupuncture, and sent my husband on his merry way.

The pain used to be, and still mainly is, on my husband's right side, which is why we've always suspected it was nerve pain. It spread down his neck and back, to his shoulder, down his arm and side. Then his right foot started hurting. He says it feels like it going to 'burst' sometimes or it tingles. He complains that it feels like it doesn't fit in his shoe, but his feet are the same size. The pain has started spreading up his leg now as well.

He recently started complaining of feeling 'achy all over' and complaining of parts of his body that hurt to touch and that's what led me on this fibromyalga search. I know we can't know for sure without a diagnosis, but the doctors around here are so useless so we may have to look elsewear.

In addition to pain, he has a few other symptoms that seem to go along with fibromyalga:

*Chronic Headaches - this is the worst. He takes advil and excedren like it's candy.

*Depression - though this may just be pain related.

*Anxiety - he will tell me all the time that he feels like something is wrong, or he's done something wrong, but he doesn't know what. This is so very unlike him and has come on in the last year.

*Fatigue - he is always tired.

*Memory issues - he seems to forget quite a lot of what I tell him (and yes, I know this is a common complaint for wives, the 'selective hearing husband' but this is not usual for him either. He's always been very attentive to what I say.

*'Fibrofog' - this goes along with the one above. He complains a lot that he feels like he can't think, that is brain is in a 'fog'

*Sleep disorders - he grinds his teeth badly in his sleep. Drives me crazy actually, the sound makes me cringe. He is also an extremely restless sleeper, he moves all night long. He snores, but I've never seen any sleep apnea.

*Some digestive IBS like symptoms. They come and go and we can't figure out if they are related to anything he eats. It's not severe, just annoying.

I know no one can diagnose my husband, I'm just trying to find answers for him. I am so sad for him being in pain all the time and I want to help him. It has also been causing some problems in our marriage because he's so irritable and angry being in pain all the time. I can't blame him, I would be too.

 

Stacey373 - November 4

Hi LeahSylina - It sounds to me like it's highly possible your husband could have fibro. Alot of times, Fibro sufferers have many different medical problems they are dealing with....This could be possible with your husband. Like with the pain and tingling going down his leg...could be a back problem or even the Sacrilliac Joint (can't spell that!)

it's really hard (and frustrating)to get a fibro diagnosis because it mimics alot of other diseases. Only about 20% of men get this, so I have to assume it's even harder for men to get a diagnosis. The main symptoms of Fibro are chronic pain for at least 3 months (most of us have had it for YEARS), pain in all 4 quadrants of the body (doesn't have to be at the same time, but you do have to have chronic pain all over your body), sleep problems, headaches, and it sounds like you've already read about the "Associated Conditions" that go along with this (like IBS).

I personally deal with constant headaches and migraines. For me, that's the worst thing with this illness. I can handle everything else, but if I get a headache, I'm in bed for days until it goes away. The grinding you are hearing him do at night is called TMJ. TMJ can become severe and causes you to have ALOT of headaches, and it makes your jaw, neck, shoulders, and arms hurt. Your husband needs to see a dentist to get a mouth guard to wear at night when he sleeps. I tried wearing one and it actually makes my jaw hurt more...but hopefully it will help him.

When it comes to the neck and headaches....there are some other things that could be contributing to this problem along with the TMJ. Check out Myofacial Pain Syndrome in the Associated Conditions boxes to see if he's dealing with that too.

Your husband should see a Rheumatologist who specializes in Fibromyalgia. it's really important to get a diagnosis ASAP so he can get on the right medications for this. There is no cure...but he can treat the symptoms. the main medications he should be taking are an anti-depressant, pain medication, sleeping meds, muscle relaxers, and Vitamins.

One thing he can do is get a blood test to check his Vitamin D levels. most Fibro sufferers are Vitamin D deficient and have to take a prescription for it.

The OTC medications he's taking (Tylenol,etc) do NOT work with Fibro. he's only going to damage his body worse if he keeps taking those and doesn't get on a prescription pain killer.

The reason he is so tired all of the time is because fibro interrupts the deep sleep cycle by sending bursts of energy to your brain so the muscles can never heal themselves. he absolutely needs to get some sleeping medication so that he can get good sleep. If he doesn't sleep right, he will feel worse and be in more pain.

Stress will also cause more pain and problems. Doing too much or "overdoing it" and pushing your body will cause more pain and problems. With fibro, we have to learn to say "No" and limit our activities. He needs to figure out what is "too much" for him and make himself stop and take a break. This is really hard for all of us to do....especially when we are having a "good day" we want to keep going and get stuff done...but in the end, we will pay for over doing it. it's even harder when one day we are just fine doing something and then the next time we do it, it causes problems.

I also want to tell you that I commend you for supporting your husband and trying to find answers for him. this illness is extremely isolating and I'm sure he feels very alone even with you right by his side. It gets to be very frustrating and depressing when the doctors can't find anything wrong with you and they think this is "all in your head" or that you are a hypochondriac.

I apologize for jumping from one thing to the next....I'm trying to remember everything I want to tell you so I'm typing it as I think of it!

that's all I can think of right now....if I think of something else I will write you again. I hope this has helped you in some way...please let me know how your husband is doing. Take Care, Stacey :o)

 

LeahSylina - November 4

Thank you so much for your reply, it has been so helpful. Don't apologize for jumping around, because your post explains a lot. I will probably be jumping around a lot here, too, sorry!

My husband sees a dentist and the dentist highly recommended a mouth guard and says that my husband is developing TMJ because of his teeth grinding. Unfortunately the mouth guard is so expensive, even with insurance, that we haven't been able to get it yet. We are hoping to work the cost of it into his flexable spending account he can get through his work next year, and until then he has been using the kind you buy in the store to protect his teeth but of course they do nothing to protect his jaw.

What he does not have is pain in all 4 quadrants of his body, and I know that could either mean he doesn't have fibro or if he does have it, he might have even more trouble getting diagnosed with it. He has pain all up and down the right side of his body, he has pain on both sides in his upper and lower back and on both sides in his upper chest (collar bone area). He also was showing me last night where he is sore to the touch on his left side, around his waist area. But he's never complained of pain on the left side below his waist. He says his left leg and foot feel great.

I did look up a lot about Myofacial Pain Syndrome last night. It caught my attention because it seems to describe that you can feel 'nodules' beneath the painful area, I hope I understood that correctly. Where my husband's pain tends to hurt the worst is in his upper right shoulder, and he has complained constantly that there is a 'bump' there that the pain seems to radiate out from. I can feel the bump he is talking about but to me it doesn't feel any different than the left side. But I know next to nothing about human anatomy so I don't really know what I'm feeling.

He also complains that the right side of his neck feels 'funny' but can't describe it properly. It hurts, but he says it feels so weird and 'loose'. I don't get it. He rubs it all the time, almost subconsciously.

He does that 'overdoing it' a lot. When he feels good he gets these bursts of manic energy where he just wants to clean everything or get a project done. He always feels so overdone and exhausted by the time he's done and the next day he hurts more.

The interrupting of sleep cycle makes a lot of sense to me, it could explain why he is so restless. He is always thrashing around in his sleep. I guess it's good I'm a deep sleeper because I don't notice unless I'm awake (I have insomnia, but once I'm asleep, I'm OUT). He talks in his sleep occasionally too but that's common for many people so I don't know if that counts as a 'sleep disorder' or not.

Thank you for what you mentioned about stress. The last 2 years where my husband's pain has become worse has been the most stressful time of our life so far. We had two children only 12.5 months apart - if that's not stress I don't know what is! It's wonderful as well, and we love our children more than anything, but it's a lot of hard work. He's also been having major issues at work. The work issues contribute to his depression for sure. Getting up and going to work every day is so hard for him but he does it because he wants to be a good provider for our family.

He is a truly amazing husband. I am trying so hard to find help for him because he has always been there for me 100%. Even though he hurts he comes home and helps me. We eat dinner, then he plays with the kids while I get the dinner dishes cleaned up off the table. Then he gets my 18 month old in the bath and down to bed (quite a task, my son is a busy boy!) while I get my 6 month old fed and down to bed. After dinner he helps me finish cleaning up and only then do we both rest. He does this every day and he never complains about it. He will often step in and do housework without my saying a thing (how many women would kill for that??), he had no problem putting in the extra help both times I was pregnant and I reached the point where I was physically too big and exhausted to keep up. I am trying to do more around the house so he doesn't feel like he needs to help me as much, but that's a difficult thing to achieve when I'm taking care of 2 under 2 who are both very demanding! Our family is my husband's life. He would do anything for us and I love him.

He's calling today to make an appointment with the local doctor he sees to discuss this. I don't know how it will go, I don't much like this doctor (the one who swore that there would be nothing wrong with his MRI) because I don't find him that knowledgeable. He's just fine if you need to be seen for something simple, but outside the relm of basic family practice I don't think he knows much. But we'll see how it goes and if that leads us nowhere I will start researching a Rheumatologist. We live in a small town so finding anyone local for these things is next to impossible, but there is a large city 2 hours away with some excellent hospitals and doctors.

He has also been seeing an acupuncturist, today will be his 4th visit. So far he hasn't seen any improvement but we aren't sure if it's too soon or not to tell.

Thanks again! I'm sorry this post was so long.

 

jrzgirl1 - November 4

You are truly blessed. I pray that your husband gets the right help and dx asap. He sounds like a great guy and you are also a wonderful wife who is loving.

 

axxie - November 4

Treating his herniated disc, the doctors and your husbands preference was to operate, based on many factors such as severity of symptoms, activity level, and how his lifestyle is affected. Surgery to remove the ruptured disc is done through a very small incision under a general anesthetic.
He returned to see the doctor and the doctor did what he was suppose to do, give him another physical examination and probed him with questions. Two things could have happened, and I see this with men, they don’t complain, or when they are face to face with the doctor, think in their mind that the doctor should know what his problems are. The fact is, the doctors are not mind readers.
Now he has symptoms and complications which indicates he has spinal nerve damage, such symptoms include pain, loss of feeling, tingling, or muscle weakness, (I could write a chapter on this one, but what you wrote is right on the money).
Hubby needs relief, he needs to go see the doctor and explain that he needs help. The doctor could in fact give him medication to help him, such as: opioid (also called narcotic) such as tramadol hydrochloride ET, extended release tablet, or other pain medications such as codeine or muscle relaxants, or other medications that could with nerve pain (e.g., amitriptyline, gabapentin). Corticosteroids by mouth or by injection that can be prescribed for severe and persistent pain.
He could also refer him for physiotherapy sessions to help him, straightened his spine, relieve some of the kinks in his back and use his other muscles such as stomach, quads and legs to help. I think what he really has, is nerve pain damage, all the others affects he has are based on the fact he is trying to rest too much and not doing enough to do some exercise to help him relieve some of his pain.
Good luck to you and like I said, return to see the doctor, maybe you need to see him with him, and explain to the doctor exactly what he is experiencing. My husband sees, the doctor and thinks that the good doctor will know what is wrong, problem is doctors don’t have a crystal ball.

 

Fantod - November 4

LeahSylina - I am so sorry to hear about your husbands situation. I want to commend you for being so patient and trying to find help for him. Many of us do not have the luxury of support from family or friends.

Fibromyaliga (FMS) is a disorder of the central nervous system that causes widespread, chronic pain. It is rare in men. Only 20% of men have FMS as opposed to us lucky women. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication.

To get a firm diagnosis of FMS, your husband needs to see a rheumotologist. This may require travel but it is imperative that other conditions that mimic FMS are ruled out. You have a couple of options to find a fibro-friendly rheumy. You can call the nearest hospital and ask for the physician referral service. Ask them for a recommendation to a rheumy with an interest in FMS. Or, you can go online to the National Fibromyalgia Association website and look at a list of fibro-friendly doctors for your state. There are still plenty of doctors (including rheumotologists) out there who think FMS is a figment of our collective imaginations. FMS is recoginised by the Centers for Disease Control, the National Arthitis Foundation and the World Health Organization.

Find a babysitter because you need to be at this appointment too so you can hear for yourself (and help him remember) what is said during the appointment/s.

The headaches that he experiences are probably FMS, his neck, the teeth grinding and chronic Excederin popping all rolled into one. He is probably getting rebound headaches from taking so much Advil and Excedrin. I would suggest that he also considers seeing a headache specialist to get medication that is effective the first time. Eating all of that stuff will destroy his stomach and liver. When was the last time he had any bloodwork done for liver and kidney function?

The burning and tingling pain is probably nerve pain. This can be addressed with Gabapentin. I have degenerative disc disease and experience similar symptoms in my legs. I take Gabapentin at night which also helps me sleep.

An effective natural alternative for pain is Curamin. Yes, it is a spice but in this instance in a highly purified form. I use a brand made by Terry Naturally for breakthrough pain twice a day. I take my prescibed medication and Curamin too. It works well for me with regards to the FMS and several other underlying conditions.

The sooner he can get the splint made by the dentist the better. I have had TMJ for years; I am a clencher and a grinder. I've also had the equivalent of a college education in restoration work done. I wear a splint at night and during the day too depending on my stress level. I now have more crowns than original teeth due to excessive wear. Getting the splint custom made now may save you a lot of money down the road. A key point to remember is that the longer a chronic pain cycle continues, the harder it becomes to stop or manage.

Memory issues are very common with FMS. My nutrionist recommended a supplement called "Phosphatidylserine" which seems to help. There is a company online called Puritan's Pride who sells it as "Neuro-PS." They have good sales.
Personally, I feel that the memory issues go hand in hand with the lack of restorative sleep.

Pain to the touch is called "allydonia." I have it to varying degrees. Wearing clothes, especially a bra can be a real challenge some days. Any pressure against my skin can feel like barbed wire. I've had to change how I dress by looking for fabrics that are lightweight and soft. Some days, I am not able to wear anything other than my nightdress.

Diet is very important with FMS. If he uses anything with an artifical sweetner including Splenda - get rid of it. Use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. He should also avoid red wine, lunchmeat and bacon due to the nitrates. Deep fried food is also a problem as any of these items will ratchet up his overall pain level.

There are now three prescribed medications used to treat FMS. Lyrica is advertised on TV all of the time. The major and most common side effect seems to be rapid weight gain. Unfortunately, most doctors are not proactive when this problem becomes apparent. It does not affect everyone but a significant number of people experience this issue. Cymbalta addresses both the pain and depression that usually accompanies FMS. I use Cymbalata and have had pretty good luck with it. The newest medication is Savella which has been used in Europe for decades. It was approved for use in the USA in 2009. OTC medication does not work for the type of pain associated with FMS. It will take time and a lot of tinkering to come up with the most effective drug regimen to manage the problem. At a minimum, allow at least two weeks (and usually longer) to notice any difference.

His sleep pattern sounds absolutely appalling between being restless, the snoring and teeth grinding. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. As a stop gap until he can see the rheumy, I'd consider Calms Forte and/or Melatonin which you can find at the Vitamin Shoppe or any decent healthfood store. The rheumy will likely prescribe Amitriptyline if he has FMS. Managing sleep issues is a crucial part of treating FMS.
Be sure that you both understand how to use any homeopathic medication and any risks associated with taking it.

The rheumy should automatically be testing for a Vitamin D deficiency via bloodwork. Something else you might consider is a gluten intolerance test. It is possible to be gluten intolerant (me) without having full blown Celiac Disease. The most accurate result is obtained using a stool sample. Either of these issues will also cause widespread pain. Problems with gluten will also cause IBS like symptoms.

And, if the diagnosis turns out to be Fibromyalgia, go online to Amazon and order "Fibromyalgia for Dummies." Like all of the dummies series it contains good basic information. Read it and pass around to friends and family. Knowledge is power. It is very important to be proactive when managing a complicated syndrome like FMS. I wish you some peace in your life. Please keep in touch with us. If you have additional questions or need to vent we are all here to help. Take care and God Bless.

 

LeahSylina - November 5

Thank you again for all the responces! This is so helpful for me.

Axxie, I have to laugh at you talking about men going to the doctor and just expecting the doctor to understand everything and know what is wrong, without really saying much or asking any questions. I don't know if that is my husband, but that sure is my dad. My dad has degenerative disk disease, like Fantod mentioned, but for ages he didn't have a clue what was going on and neither did his doctors. My mom finally started going to the dr appointments with him because when she would ask how the appointment went and what the doctor said, my dad couldn't even remember. 3 surgeries later he is still in considerable pain and is on a pretty heavy duty pain management program. It's so rough for him, nothing helps him really.

My DH was on gabapentin before his surgery, and for a short while afterword. He stopped taking it because it didn't seem to be helping. Maybe he needs a higher dose, or a different nerve medication.

Fantod, thank you for all your wonderful information! It's so helpful.

I have tried to ask my DH to not take Excedrin, espeically because the caffeine makes him jumpy and sick later, but he takes it because when his headaches get bad he says that nothing else works. I don't think he's ever had liver or kidney function tests taken. He's not exactly a go to the doctor for a yearly physical type. He only goes when there is an issue. I will tell him about the rebound headaches and hopefully he'll stop taking it.

You mentioned wearing clothing being painful. My DH doesn't complain of his clothes hurting him, but he'll constantly pull at his jeans (particularly his right side, but on his left side too), complaining that he just CAN'T get comfortable, no matter how hard he tries, and this his clothes feel funny against his skin.

Thank you for the diet tips. We don't use artifical sweatners in our house, only natural sugar or honey. We don't eat much deep fried food becaues it makes him sick to his stomach (his mom has gallbladdar issues and we suspect he does too). We don't drink wine (but he does have occasional beer - like once a month - is that okay?). I will tell him about the lunchmeat and bacon. We don't eat a lot of it anyway. We eat mostly lean meats, fruit, veggies, so an overall healthy diet, but we both love carbs. It's funny you should mention getting tested for Celiac or a gluten intolerance, because I have been looking into that not for him, but for myself. I have had digestive problems for years and have may symptoms of a gluten intolerance but didn't know what it was until just a few weeks ago. We've been discussing going gluten free just to see if it makes me feel any better and DH was willing to do it with me. If we do, I'm sure going to miss my bread...and cereal...and well a lot of foods.

Thank you for the tips on medications, both Rx and OTC and natural. I will pick up some melatonin for him. I used to take it for my insomnia before it stopped working.

 

Fibrosukz - November 5

To rule a few things out would be thru blood work, test for RA, Lupus,MS. I have a close friend that started with symptoms of headaches, right hand and foot tingling and her foot feels triple to size and has problems walking. Among other side affects such as IBS, fatigue, pain in lower back, shoulders and neck. She also thought she might have Fibro but it came back she has MS.

I also went thru nerve conductive testing and other test but not til 6months later when i got into a Rheumy that i have Fibro. I would reccommend going back to the doctor ask for blood work and a rheumy.

 

kvc33 - November 6

Hi I feel for you and your husband very much. Did you know that there are lots of different types of headaches and that good treatment depends on diagnosing them correctly? Get your hubby to right down as much info about them as possible. Location, how long they last, what they feel like, if they come on at a certain time of day, what position he prefers to be in when having one, if the pain moves around, if hot or cold makes them better or worse, and if he has other symptoms along with them such as tearing in the eyes. If he has nausea, light sensitivity or sees auras he may have migraines and they are treated with specific classes of medications. If the headaches are in his sinuses he should see an Ear, Nose and Throat doctor but sinus headaches are also often migraines. Caffeine is really bad for fibro as it revs up an already stressed nervous system, causes insomnia and worsens pain. The teeth grinding is called bruxism and shows that he is stressed. Since he is so restless at night get him to a sleep clinic to have a sleep study done. He must learn to pace himself and not use up all of his energy when he has some. Get an opinion from a chiropractor and sports medicine specialist about his pain. An antidepressant may be good for him because it addresses pain, depression and sleep issues. Poor digestion can be simply from stress and poor sleep. However food additives may be the culprit too. Have him keep a food diary to see if there is any connection to anything.

 

Fantod - November 6

LeahSylina - I read your post and wanted to add a couple of additional comments. A beer once in awhile is not going to cause a problem. But, most people with FMS are on medication that precludes drinking anything. And, if they do, they feel pretty terrible the next day regardless of quanity.

As I understand it, your DH is the primary breadwinner. All the more reason for him to have a regular physical check up. He has got to make time to see a doctor on a regular basis. It sounds like he has a cascade of health problems that grow more complicated every month. Ignoring them or self medicating with OTC remedies is not getting him anywhere. The sooner he gets in to see a rheumy and addresses the other issues the better for everyone in your household.

Trying a gluten free diet is now less onorous than you may think. Most regular grocery stores carry several lines of gluten free items including baking mixes for breads or sweets. You can also find a good selection of the latter in the King Arthur Catalog. You should also be aware that gluten is in many medications too. An example would be Neurontin which is gluten free versus its generic equivalent Gabapentin which contains gluten. There are several sites online which you can find through Google that will help you with food/beverage/medication questions regarding gluten content. Good luck to you and your DH. I hope that you are able to get his health issues sorted out and that he begins to feel some relief. Take care.

 

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