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Posted 1/15/2016 8:41 AM (GMT 0)
I am so desperately hoping that someone can point me in ANY kind of direction here.

For the last three years I have been back and forth to my GP and specialists with a constant, worsening pain mainly in my lower back and both knees. I also get very painful, stiff fingers when I carry a shopping bag or do the dishes for example. The pain in my knees ranges from a crunching, collapsing sensation to aching to sharp stabs when I walk down steps. My lower back is a CONSTANT ache with central "sharp/pinching" points (which the ache moves outward from). The sharp pain varies across my lower back.

I have had scans, all kinds of meds, xrays and blood tests and apparently everything is absolutely perfectly healthy and I am supposed to just "get over it" - my GPs words yesterday. The pain has become worse every day, little by little, over the last 3/4 years and it has gotten to the point where standing up from the sofa, my bed or the toilet causes me pain. Getting out of the shower, my knees are shaking and I stumble. I had to leave my job because standing for more than a few minutes and I am literally keeling over in agony. I am 27 and was slim when this pain all started (I gained some weight the less active I became but in general it had nothing to do with being overweight).

I am so sorry for anyone that dares to read that monster of a first message but I am SO lost, I am beyond desperate and I just seriously do not know where to turn now. My GP, two rheumatologists and an internal medicine doctor have all just basically told me there is nothing that I can do, but if the pattern carries on, in a few years I won´t be able to get out of bed anymore let alone have a career or a family.

Does anyone have any suggestions??? Any tips or help they can offer from personal experience??

Thanks in advance :)

Post Edited (JoannaL) : 1/15/2016 1:55:16 AM (GMT-7)

Posted 1/15/2016 9:27 AM (GMT 0)
Hello Joanna and welcome to the CP forum and I am sure sorry to hear about your issues. Sadly yours is not the first such story of increasing pain,immobility issues and countless tests and drs with out answers. We understand here how frustrating that is an how it can play on your state of mind because many here have been where you are. The looks and comments,the feeling that no one believes you after awhile and think your imagining it or lazy or searching for sympathy when in reality most of us would do absolutely anything to stop all of the pain and issues that came with it.

First let me say I sincerely hope you got copies of those scans and Mri reports and if you didn't do so now. Second I see rheumy,gp and internal med drs,its what I don't see in there that's troubling.

Were the MRIs of your back and knees and what part of your back and I see no mention of a Neurosurgeon consult or even orthopedics and those are definitely two I would expect to see if your having back and knee problems and have had scans of those areas simply because they are the go to drs to know if there's something there that could cause the pain and issues your having.

The forum is a good place to come for support and advice but mostly just understanding. Hang in there and stay strong and determined and don't let anyone tell you your imagining this pain. Keep searching for the answers.

I will check back later for your reply to see if there's something I can add to this.
Posted 1/15/2016 9:37 AM (GMT 0)
Thank you so much Vickie for your response!!

My scan was of my lower back, the sacroiliac joint I think(?), but no, I haven´t seen a neurosurgeon or anyone in orthopedics. My GP yesterday said that basically, because the scans and xrays show nothing/no damage and because my blood test results came back all clear, there is physically nothing wrong with me and I have to just get over it...

It is so true what you say, I have been made to feel completely lazy, crazy and dramatic. Like I am just looking for attention or a problem, but when you are 27 and struggling to get out of the shower or stand up from the toilet, well it isn´t an easy thing to admit and even less so in front of an audience...

On the nights that I do fall asleep, I wake up every 2 or 3 hours and there is this incredible sensation of itching in my back and it travels down my thigh bones in to my knees, I know that bones can´t itch but that is how it feels, and then the pain comes and it is another battle at 3am cry

My GP told me not to come back unless "something new happens", I wasn´t even show copies of my xrays or scans (which is unusual here in Spain, normally they give you copies as soon as you have them done).

Thank you for being the first person to make me feel like I´m not going mad, even my fiance suggested that I should try just "forgetting about and getting over it", I am so exhausted, so fed up of feeling like I can´t live any of my life. I´m rambling now but thanks again for the message!
Posted 1/15/2016 12:19 PM (GMT 0)
Hey Joanna.Welcome to HW.

Because of your age a lot of Doctors have made up their mind before they talk to you.

You're the only one that knows how you feel.Vickie gave good advice.

It takes a while sometimes to find a Doctor that treats you right.

If you feel like the Doctor you're seeing is not helping you then find another Doctor.Ask around to find out about Doctors before you see them.

The percentage probably isn't great but there are good Doctors out there that have our best interests in mind.

Take care and God Bless.

Rick
Posted 1/15/2016 12:30 PM (GMT 0)
Rick thank you!

I was actually told yesterday that he was not going to give me anything for the pain or for helping me sleep at night through the pain because I was too young...

After reading a few posts here it is reassuring (and worrying) to see that I am not the only one hearing the same stuff over and over!

Thank you again, any advice or even reassurance like you and Vickie have both provided is a step further to making me feel a little less crazy!
Posted 1/15/2016 12:36 PM (GMT 0)
Itchy bones...wow. I get that sensation sometimes. Not that I have an exact answer for it, but the validation might help. I've had MRIs laying down and sitting up. Not everything will show up in just one position. Something to think about.

While most people suffer from sciatica, my pinched nerve is a different one and the pain only goes down to my knee. I was 'dismissed' by quite a few doctors because it didn't go all the way to my foot!

One of the things my brain has been toying with is that the Chicken Pox virus 'hides' in the nerve ganglia at the base of the spine and at the base of the neck. I've been wondering if there is any correlation because that is where I have most of my 'issues' of spine pain.

This forum helps, not only because we share our own experiences and understand when others need to blow off steam, but in a way we are doing our own 'research'. Keep posting and let us know how things go.
Posted 1/15/2016 12:48 PM (GMT 0)
Pitmom yes it is definitely a strange sensation, and it always feels very specifically in my bones, and usually just before a lot of aching pain. During the itching feeling I also get twitchy legs, do you ever experience that?

I thought for some time that my back pain might be a trapped nerve or sciatica, but the pinching and sharp pain that I get differs in region, sometimes really low on my left side (like the past couple of weeks), sometimes a little higher on my right side and everything in between so as far as I can gather, it wouldn´t be a trapped nerve if the pinching wasn´t localised :/

My biggest problem at the minute is trying to figure out if all the pain I have been experiencing is from the same issue, my fingers and knees have similar pain but my lower back is something completely different. That being said when my back is itching, it runs up and down both thighs and in to my knees so surely it must be connected?! I really don´t know...and it seems as though my dr and specialists have given up trying to figure it out!

What have you found helps ease the pain with your pinched nerve? I tried Thermacare last night for the first time on my back (as well as the nightly dose of Tramadol), it seemed to make the pain worse for the first few hours, but by around 4.30am I had complete relief and it has lasted through to now, hopefully it is something I can keep using for the future to offer a little relief!
Posted 1/15/2016 1:20 PM (GMT 0)
Joanna, for me ice helps with the nerve issues. Yes, I get 'restless leg syndrome' but have not tried the meds for it. It's not an all the time thing for me.

I feel I must ask...have you ever been tested for Lyme disease? I've had it and it attacked my joints.

Ibuprofen works best for me for my spine. I use Naproxen Sodium for hip and elbow pain. Alternating on the bad days. I get my liver enzymes checked every three months.

You say you have difficulty getting in and out of the tub. Can you get grab bars installed? A nice soak in Epsom Salts might help.

Do you take any vitamin or mineral supplements to support bone and joint health? Do you drink enough water? I take Vitamin D and am looking into other supplements to help keep my bones and joints as healthy as possible.
Posted 1/15/2016 2:09 PM (GMT 0)
One thing to keep in mind is that auto-immune conditions can take several years to identify and diagnosis. Auto-immune markers in the blood can, and usually do, wax and wane over the course of years before settling on a blood level (or titer) that meets the definition of a clinical diagnosis.

Although you are working with two rheumatologists and would expect them, as specialists of auto-immune diseases, to be sensitive and knowledgeable of the delayed nature of presentation that are auto-immune illnesses, this may not be the case. Too often is the case with an MD that if a blood laboratory test is not definitive in identifying a condition then you are "good/OK, everything is fine" - when this is not the case. Auto-immune titers wax and wane. A low-normal finding can be disregarded as "normal" when, in fact, a low-normal value can be quite symptomatic for a given individual.

I would encourage you to get copies of all of your tests and keep them in a notebook or binder arranged in sequence by date. Look for low-normal test results that may have been passed off as "normal." Look for trends in a given test/blood value over time. Is there a gradual increase or decrease in a given test/laboratory value over time?

Another specialist to see would be an endocrinologist. Hormones are much more than what we think of. There are hundreds of hormones that coordinate how the body works, chemical messengers. Endocrine dysfunction often has diffuse joint pain and fatigue as initial symptom presentation. "It is all in your head," can be so disheartening to hear when a physician brushes you off or dismisses symptoms as unimportant. "It is all in your head" can be a true source of a pituitary disorder or endocrine disorder - the pituitary gland sits at the bottom of the brain and coordinates the endocrine system. Disorders the pituitary gland, like auto-immune conditions, are also slow to develop over time and often first present when a person is in the late 20s'/early 30s.
Posted 1/15/2016 2:21 PM (GMT 0)
Based on your original post and your follow up posts. I suggest you go see a neurosurgeon that specializes in neck and back issue. Not an orthopedist, but a neurosurgeon. Bring all your films and tests with you when you go. Describe your symptoms and what you have tried. They will take it from there.
Posted 1/15/2016 3:24 PM (GMT 0)
Hi Joanna,

You've received some great advice.

I can add that I have a similar experience. It took 25 years to get my diagnosis of hemochromatosis, a genetic mutation whereby my body hoards iron. This mutation first appeared 60 generations ago in the far north of Scandinavia. My iron levels have never been flagged high but were always on the high normal range & still are. An astute rheumatologist diagnosed me but any good medical professional could have. Genetic testing has really advanced and this may be a path you wish to pursue.

Basically, the soft tissue in my body is hardening. It is painful. My joints are deteriorating and I have had several spinal fusions, joint replacements, stomach surgery, hysterectomy, etc. to repair and stabilize the damage done. Everyone told me to seek out a neurosurgeon, which I did, but it was an orthopedic surgeon who performed my most complex spinal surgery including the opening of my skull. My point is that there surely is someone out there who will keep digging for you until you get an answer.

I encourage you to remain vigilant. Don't give up. Refuse to take no for an answer. After the Cleveland Clinic, Mayo, and a renowned teaching hospital were unable to diagnosis my condition, sending me home once again with no diagnosis, I was fortunate enough to find the excellent rheumy who remains my PCP today.

Hope this helps.

Cary
Posted 1/15/2016 6:34 PM (GMT 0)
The point we are all trying to make Joanna is NO one would willingly chose to live as we do and why anyone especially medical professionals would think that is beyond reasoning. Your records are yours and your entitled to see them and obtain copies of them with the exception of some psych records that are withheld for your protection. Get those you need them in hand since it moves appointments along faster with new drs.

There could be several things causing the issues your having and several have been mentioned here. Lymes and other tick borne diseases go undiagnosed for lack of knowledge by practitioners sometimes years and the damage by then is done. You might try posting in the Lyme forum here and putting your symptoms out there or just reading to see if anything clicks about your issues and Lyme. They have a very knowledgeable group of people in there as well as a list of Drs who are world renown.

First place to start as far as I can see is getting those scans and seeing orthopedic or Neuro whichever comes first. Keep pushing for the drs to not give up just yet.
Posted 1/16/2016 11:19 AM (GMT 0)

pitmom said...
Joanna, for me ice helps with the nerve issues. Yes, I get 'restless leg syndrome' but have not tried the meds for it. It's not an all the time thing for me.

I feel I must ask...have you ever been tested for Lyme disease? I've had it and it attacked my joints.

Ibuprofen works best for me for my spine. I use Naproxen Sodium for hip and elbow pain. Alternating on the bad days. I get my liver enzymes checked every three months.

You say you have difficulty getting in and out of the tub. Can you get grab bars installed? A nice soak in Epsom Salts might help.

Do you take any vitamin or mineral supplements to support bone and joint health? Do you drink enough water? I take Vitamin D and am looking into other supplements to help keep my bones and joints as healthy as possible.

I haven´t been tested for Lyme disease, I am going to possibly sound ignorant here but do you not need to have been bitten by a tick for it?

I have been on all kinds of Ibuprofen mixtures and naproxen, neither touched the pain let alone helped, the only thing that has ever eased the pain enough for me to function or sleep is Tramadol, but in all honesty I don´t *love* taking it, I would love to find an alternative.

I have tried general "joint health" supplements but I have never tried just VitD, I will give it a go though!!

Baths always help whilst I am in them :D I enjoy epsom salts and green tea with some lavender drops, it eases the pain instantly when I get in, but 5 minutes of being out and the pain in my back and knees returns the same, I guess at this point it is winning the battle over the war right!

I can´t have any cold near my knees or my fingers, they get unbelievably stiff and the pain is incredible, I have to admit though that I haven´t tried any cold on my back, the heat helps mostly but I have to be honest that I was a little scared to, the pain I get when my knees are cold, I don´t think I could handle in my back too :D It might be worth a try one night though!
Thank you again, I really can´t put in to words how much I appreciate ANY advice at this point..

Post Edited (JoannaL) : 1/16/2016 4:27:12 AM (GMT-7)

Posted 1/16/2016 11:24 AM (GMT 0)

(Seashell) said...
One thing to keep in mind is that auto-immune conditions can take several years to identify and diagnosis. Auto-immune markers in the blood can, and usually do, wax and wane over the course of years before settling on a blood level (or titer) that meets the definition of a clinical diagnosis.

Although you are working with two rheumatologists and would expect them, as specialists of auto-immune diseases, to be sensitive and knowledgeable of the delayed nature of presentation that are auto-immune illnesses, this may not be the case. Too often is the case with an MD that if a blood laboratory test is not definitive in identifying a condition then you are "good/OK, everything is fine" - when this is not the case. Auto-immune titers wax and wane. A low-normal finding can be disregarded as "normal" when, in fact, a low-normal value can be quite symptomatic for a given individual.

I would encourage you to get copies of all of your tests and keep them in a notebook or binder arranged in sequence by date. Look for low-normal test results that may have been passed off as "normal." Look for trends in a given test/blood value over time. Is there a gradual increase or decrease in a given test/laboratory value over time?

Another specialist to see would be an endocrinologist. Hormones are much more than what we think of. There are hundreds of hormones that coordinate how the body works, chemical messengers. Endocrine dysfunction often has diffuse joint pain and fatigue as initial symptom presentation. "It is all in your head," can be so disheartening to hear when a physician brushes you off or dismisses symptoms as unimportant. "It is all in your head" can be a true source of a pituitary disorder or endocrine disorder - the pituitary gland sits at the bottom of the brain and coordinates the endocrine system. Disorders the pituitary gland, like auto-immune conditions, are also slow to develop over time and often first present when a person is in the late 20s'/early 30s.

Thank you!!!

It is literally all my GP kept repeating to me, "your auto immune markers are fine, they are fine, there is nothing physically wrong with you."

I think that I will have to go and make another appointment, get all my things together and demand to see a different specialist, thank you for all that info, I have a lot of reading to do :) It is such a relief to have a direction to even look in right now.
Posted 1/16/2016 11:31 AM (GMT 0)

CaryF said...
Hi Joanna,

You've received some great advice.

I can add that I have a similar experience. It took 25 years to get my diagnosis of hemochromatosis, a genetic mutation whereby my body hoards iron. This mutation first appeared 60 generations ago in the far north of Scandinavia. My iron levels have never been flagged high but were always on the high normal range & still are. An astute rheumatologist diagnosed me but any good medical professional could have. Genetic testing has really advanced and this may be a path you wish to pursue.

Basically, the soft tissue in my body is hardening. It is painful. My joints are deteriorating and I have had several spinal fusions, joint replacements, stomach surgery, hysterectomy, etc. to repair and stabilize the damage done. Everyone told me to seek out a neurosurgeon, which I did, but it was an orthopedic surgeon who performed my most complex spinal surgery including the opening of my skull. My point is that there surely is someone out there who will keep digging for you until you get an answer.

I encourage you to remain vigilant. Don't give up. Refuse to take no for an answer. After the Cleveland Clinic, Mayo, and a renowned teaching hospital were unable to diagnosis my condition, sending me home once again with no diagnosis, I was fortunate enough to find the excellent rheumy who remains my PCP today.

Hope this helps.

Cary

It helps a lot, thank you!! Amazing that your levels were in the normal range and yet your body was hoarding the stuff!!! That is also exactly what Seashell said, that normal ranges can be differ so much in the individual that it is difficult to just go by those results sometimes.

It feels so hard right now to not give up, it feels as though every doctor that I have seen over the last 3 years has just put all of their efforts in to telling me it isn´t real and I felt so humiliated, sat there being told by a Dr that there is nothing wrong with me, that my pain is so minimal that I can just "move on and forget about it". Thank you for the advice and encouragement though, all of these comments are making me feel so much better about the situation, like I am not completely mad :D
Posted 1/16/2016 11:44 AM (GMT 0)

nvrthesame98 said...
The point we are all trying to make Joanna is NO one would willingly chose to live as we do and why anyone especially medical professionals would think that is beyond reasoning. Your records are yours and your entitled to see them and obtain copies of them with the exception of some psych records that are withheld for your protection. Get those you need them in hand since it moves appointments along faster with new drs.

There could be several things causing the issues your having and several have been mentioned here. Lymes and other tick borne diseases go undiagnosed for lack of knowledge by practitioners sometimes years and the damage by then is done. You might try posting in the Lyme forum here and putting your symptoms out there or just reading to see if anything clicks about your issues and Lyme. They have a very knowledgeable group of people in there as well as a list of Drs who are world renown.

First place to start as far as I can see is getting those scans and seeing orthopedic or Neuro whichever comes first. Keep pushing for the drs to not give up just yet.

Thank you for checking back :)

I know it sounds ridiculous, but I cannot put in to words how much these few comments have meant. I have literally spent the last 3/4 years of my life either in complete agony or being told it is all in my head. My life, work, social life, everything has been put on hold and after seeing my GP yesterday it really felt like I had nowhere to turn and that I just had to deal with this pain for the rest of my life.

I have not been bitten by a tick (as far as I remember) but it is worth taking a look at the forum, thank you.

I must have said it 50 times since replying but THANK YOU!!!! I really appreciate the time everyone took to reply and offer advice :) :) :)
Posted 1/16/2016 12:08 PM (GMT 0)
Ah, there's the rub. Some of these ticks are so small! Not everyone gets the 'bulls eye rash' either. I didn't. It was almost a month before the other symptoms started showing up. Started with stiff, painful fingers which I attributed to work. Then progressed into the wrists, again, I figured it was from work. On up my arms, then my knees, hips, etc. I didn't go to see the doctor until I literally couldn't get out of bed.

Having the test done is not a big deal, but the results of the test are! By the time I had mine done, I felt like the Tin Man from the Wizard of Oz...desperately in need of an oil can...frozen in place!

Even if the test result is negative, it's one more piece of the puzzle in that you will know what it is NOT. Sometimes, the only way to figure out what is going on with us is ruling out one thing at a time.

My daughter is presently in remission from Cushing's Disease. Hindsight is 20-20 and looking back from the onset of the first symptoms that got our attention it took 9 years to get a diagnosis! Each individual symptom mimics other disorders. Even with the whole list, until it is confirmed by blood tests, urine tests, MRIs, etc. the patient is looked at as though they are crazy. Told to 'eat less, exercise more', blah, blah, blah. What made it even more frustrating is that I had done some research and was 'sure' of the diagnosis years before it was confirmed. All I could do was push her to push the doctors for tests. The condition is so rare, most of the doctors didn't know what time the tests should have been taken, so she got a lot of 'normal' results! Do the research. Find forums here or elsewhere and learn from others that are ahead of you on the 'path' to diagnosis. I'm happy to tell you that once the diagnosis was made, she was in surgery within a month to have the offending tumor removed and she is now in remission!

Leave no stone unturned! We're here for you!
Posted 1/16/2016 2:08 PM (GMT 0)
Don't get discouraged when blood work does come back negative. I'm the autoimmune queen, and I had many negative results initially. It can take years for some stuff to show up. You may also never get a positive. There are autoimmune disease that are classified and zero-negative, which means much blood work does test negative. Diagnosis of many diseases are made by symptoms.

Also, lyme disease tests are incredibly inaccurate.

"According to the Centers for Disease Control, “the diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs and known exposure.” Based on this recommendation, the diagnosis of Lyme disease should not be contingent on surveillance criteria which requires a positive ELISA* followed by five positive CDC bands on a Western Blot".
Posted 1/16/2016 11:15 PM (GMT 0)
What type of work do your do ?
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