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charity1234 posted:
Hi there, My name is Charity and I am 35 yrs old, I have been suffering from Chronic Pain for about 5 yrs now and still no diagnosis... I have seen so many diff doctors but no one can figure out what is wrong with me..


I have been told so many diff things that it is such as Lupus, Ra, FMS, Stills disease, Familial Mediteranian fever, Poly Myositis, Hereditary Angio Edema and so on but still no one has given me a firm Diagnosis.

I have been tested for everything. I have had a bone marrow biopsy, full bone scan, xrays, ultrasounds, countless blood tests and the only thing the blood tests show is extremely elevated white blood cells and increased Platelets.

My symptoms are full body pain normally on both sides, crippled fingers, weight gain, no energy I don't sleep for days, swelling etc...

I need help I am so tired of feeling this way, I am to the point that I want to give up. The pain is so deep and goes right into the bone it feels like my bones are grinding and there are days I need to use a cane to walk because I can't do it on my own.

Does anyone know what this could be? I do have a pain management doctor who is just treating the pain and trying to keep me as comfortable as possible but he continues to say that whatever this is is extremly rare but can't figure anything else out...

I currently take 15mg of hydrocondone twice a day, 2mg of dilautid every 4 hrs as needed, 225 mg of lyrica, 0.5 mg of nabilone, at bedtime.

Please help me I am so lost and do not know what to do...

Thank you, charity
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charity1234 responded:
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peskypain responded:
Sorry to hear about your pain...

Have they checked your thyroid and adrenal gland functions?

I would find a Board Certified Rheumatologist or Internist and make sure those things are checked and ruled out of any illness.

Then, if everything else is coming up clear...then it may be Fibromyalgia.

And if you are not able to sleep...then trying all the non medicinal means first from melatonin supplements, sleepy time tea, make sure your room is 68 degrees or cooler, and complete darkness...not even a computer or phone blinking lights.

Making sure you do not take naps during the day and go to bed at the same time and wake up at the same time. Do not drink alcohol and no smoking. As well as make your early evening...before 7pm...a light dinner with both protein and complex carbohydrates...no caffeine past 12pm.

Then if all that is tried...then maybe a sleep aid like Ambien or Lunesta may be necessary. The key is not taking it at the same time as your pain meds or any meds that cause drowsiness or respiratory issues.

I don't see that you are on any actual muscle relaxers? Obviously you live in a state where the synthetic cannabinoid is legally prescribed and even though that may "relax" someone...it's not an actual muscle relaxer.

So I would ask the Dr. about something like Flexeril, Robaxin, Skelaxin, or Baclofen. Again....not to be added with any sleep aid at the same time of dosing.

The opiates you take only just "mask" the pain and make you not care as much but as you know...they do not address the actual issue of nerve or muscle pain.

Have you also had MRIs done to rule out any type of disc/spine issues? That would be one more thing to make sure it isn't something that can be surgically fixed. Obviously everyone over the age of 25 will start to have degenerative disc issues due to natural aging. And if someone smokes...this will accelerate this progress.

So it seems there are a few more things to rule out/in.

If it happens to be Fibro....there are many ways to lead a healthy and active life.

No matter what the issue. It's important to have a good daily exercise program 30-45 minutes a day. Do yoga/stretching, eat well and maintain a healthy weight. And find things in your life that bring you joy whether that is a career, or being a stay at home mom (career in itself!), do volunteer work to give back to others and take your mind of ourselves, spend time with family and friends laughing and enjoying life.

Good luck...
 
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chronic1008 responded:
I agree with Peskypain. I didnt see any mention of MRI, cat scan, myelogram or other imaging. This would be a great place to start to rule out/in spinal issues.

Best of luck...
 
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charity1234 replied to peskypain's response:
Thank you so much for your reply.. I have had full thyroid function tests done a number of times, MRIs have been done as well. I have seen rhuematoligists, allergists, internal medicine, Neurologist as well.

I have never tried the muscle relaxers so that is one thing to ask my Pain management doctor.

I have an appt tonight with a Monk Doctor that only practices natural medicine so we will see..

Thank you so much,
Charity
 
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77grace responded:
Hi charity1234,
I wish I had the magic answer,But I don't!!
\The first thing I thought of too is Fi bromyalgia !That causes pain all over and also affects your sleep!
I have a good friend who has it and you hae simalar syptoms!
Meanwhile,try to hang there! Maybe find a new Dr. or an Internist?Somebody who deals with unusall illness,your Pain Dr. isn't!I don't remember if you said you have tried a Nueroligist!!!They are Great!
I have Chronic pain too and understand,I'm here for you!
Love 77grace
 
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annette030 replied to 77grace's response:
Hi, Charity

It is not FMS alone, but it could be FMS along with something else maybe. FMS does not cause altered lab work, crippled fingers or visible swelling.

I don't know what to tell you, if you have not been seen at a university teaching hospital, that might be of use.

Meanwhile just keep treating the symptoms like you have been.

Take care, Annette
 
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charity1234 replied to annette030's response:
Thank you so much for your replies.. I was seen last night by a Monk Doctor from Bejien, I am not sure what type of doc he is because he does not practice Western Medicine. He performed electrical acupunture on my knees and ankles..

He was saying that the nerves are bunched together, they are not where they are suppose to be, the muscles were short and extremely tight as well he mentioned that the tendons and my muscles are stuck together..

Has anyone heard of this?
 
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annette030 replied to charity1234's response:
Why would you see a doctor without knowing what type of doctor he was? Is he even licensed? Did the treatment help you?

It sounds as if he might have been a Doctor of Oriental Medicine. I had one in Reno many years ago, who did acupuncture on me. Unfortunately, it did not work. My MD said it does help about half of patients with FMS (that is what I have) for several months, but then usually stops working. My insurance even paid for it. In Reno, they had to be licensed.

Is this information new to you, or have other (Western) doctors told you similar things? About your leg muscles, tendons, etc.?

Take care, Annette
 
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charity1234 replied to annette030's response:
Hi Annette,

Yes he was licensed my husband seen his plaques up and he is licensed to practice in Canada which is where I am at..

It did help one leg but not the other I am going to try and go back to see if he will do my hip next.

Yes, the information he gave me is the first time anyone has mentioned it I am going to ask my PM doc about it and see what he says. I am trying now to see if I can find some diseases that has any of these as a symptom and see what I can find.. Have you heard of anything like this before?
 
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annette030 replied to charity1234's response:
I am sorry I really have never heard of anything like that. There is a certain amount of variety in how peoples' bodies are put together, but basically they are similar. See what your pcp says about the whole thing.

If it is helping your symptoms I would continue with the electrical acupuncture, I don't think it can hurt you or make you worse.

Take care, Annette
 
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charity1234 replied to annette030's response:
Thank you so much Annette your posts are always so helpful..I am stumped as well and very very frustrated its one thing to be sick but its another to be sick and not know the cause of it...

I am ready to give up.....

Thanks charity
 
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annette030 replied to charity1234's response:
For a while anyway, just treat the symptoms. When you are in a more positive place, look for a diagnosis again.

Never give up.

Take care, Annette


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