Chronic pain

[Leanna_Terry]

Um, i really dont know where to start. Well my husband has beem having back pain since Halloween 08 it would come and go. Then about a couple months ago he broke out into a rash everywhere! His hands,feet,under arms, genital region. But the rash started on his feet. So, they diagnosed him with subacute spongiotic dermatitis (jeez what a mouthful). Well, after this was all diagnosed and started to go away he started having severe back pain,chest pain, both arms, a new on just arised both his knees. First they say Fibromyalgia so, they are doing a whole bunch of blood tests to figure this out or to "rule out other possiblities". Well we are still awaiting the results of all the blood tests and we went to the doctor just last night. He said it might be somthing to do with his nerve endings so, they gave him neurontin 300mg. Well, he's taken it, the doctor said it supposed to help with pain. Well, its not hellping at all i can tell you right now he is in worse pain i dont know how it can be any worse for him he's been through enough. He can't sleep at night because he's in so much pain! He can barely work! I mean its hard on us i honestly dont know what to think. We tell the doctor every possiblity or every pain or symtom we can think of! It's upsetting to watch my 23 yr old husband in so much pain. I mean is this pain connected to the subacute spongiotic dermatitis? I'm at a loss. I would really value someones opinion on anything! If anyone has any idea what this could be or what is causing this it would be greatly appricated!  

[Tuckamore]

Thank you so much in your updates. I must apologize that family medical issues has kept me away from my Forum, sorry our Forum.

I am so happy that you have an answer. It may not be good news but at least you have a name and hopefully treatment. You can fight when you know what you are fighting. It sounds like you have discovered a competent and caring physician. And the even better news it that your husband appears to be improving.

When I had a diagnosis after years of searching it was just knowing that I wasn't crazy that helped me over all. That may be part of your husbands improvement.

A strep infection does not aways have initial symptoms, as now your husband can attest.  I will look forward to your continued updates.

My best to both of you.

[Leanna_Terry]

Another update I think we've finally found out what he has after almost 2 years. Maybe this is all over. But, to be honest the battle has just begun. My husband has tested positive for Strep A&B. The doctors are worried tho. about his heart and the wierd rash that could be a flesh eating disease. Im hopeful now that we can finally treat this and move on with our life together. Its crazy tho. its so rare in adults and i dont even remember him having a bad sore throat or strep. But, we were also told that it could have lay dormant. Im so happy this doctor really took a good look at him. This man is a true godsend! Im so glad they caught it! I shall leave more updates on how he is doing but to be honest he seems to be doing better. He's kinda bummed about being on bed rest for 6 weeks but it for the better.    

[Leanna_Terry]

Well, another update the subacute spongiotic dermatitis is all the way gone a little scaring but nothing thats serious. We had almost given up hope on finding out what he had. When he started breaking out in this other kind of rash. It was like ring worm like all over his upper torso and legs. He started having really bad chest pains it freaked me out! Then his knees stated to swell and get red and was warm to the touch. I immidiatly took him to the hospital that was a daunting task since he could barly walk but we made it. The doctor seemed really conserned. Well he told us my husband might have Rheumatic Fever. We are doing blood tests tomarrow all i have to say is if this is it this man is a godsend! Thank god if they caught it. I hope this will all be over soon im ready to take this disease down!

[Tuckamore]

Hi Again Leanna,

Thank you for the update. I am sorry that nothing has changed. I am assuming that the rash is still basically gone, pain persists and that he is still basically undiagnosed.

Acute Spongiotic Dermatitis is the basic terminology applied to the skin condition commonly known as acute eczema. Although this condition can be painful the symptoms are similar to that of chicken pox or mosquito bites. If the diagnosis is correct it should not be the cause of his debilitating pain. Did they biopsy the lesions or rash?

Did the preform these blood tests, Erythrocyte Sedimentation Rate (ESR),  C Reactive Protein (CRP), Antinuclear Antibody (ANA), Erythrocyte Sedimentation Rate (ESR or Sedrate) or a Rheumatoid Factor (RF)?  Maybe a test for Lyme's Disease?  

If any of the above are elevated they may indicate certain infections, abscesses, some types of arthritis, muscle and connective tissue disorders, tissue injury (from multiple causes) and some cancers. An elevation basically tells the physician that something is going on and than they must search to find the diagnosis. If these tests are negative it rules out a lot of possibilities. I would ask what specific tests were done and even request copies. Becoming a detective with the physician can be beneficial. Track every test and request a copy of everything. Begin your quest.

I just checked your post on the Dermatology Forum. I am sorry it did not receive any responses.

I would request a CT Scan. An MRI may also be beneficial but my first choice would be a CT with contrast. Contrast adds more definition.

I would also request referrals to other specialities. More eyes, more opinions can put the pieces of a difficult puzzle together.  A large teaching hospital or one of the well known national clinics may also be beneficial. Leave no stone unturned.

In the meantime and at the very least your husband deserves to be comfortable. I hope his pain is being managed. If not request that they do at least that. I am a bit familiar with your area of the country there should also be some Pain Management Physicians that can lead some suggestions.

Best of luck to you. Again thank you for the update. Please let us know how your husband progress. I hope 2010 will bring you both some much needed answers.

[Leanna_Terry]

Well, to update everything on my husband he's still in alot of pain. We finally got all the tests back completely normal nothing wrong. We are so clueless and at a loss i dont know anymore.We really appricate all the responces from everyone. I think the next step for us is to get an MRI. Also, I put a question on the Dermatology Community and no responces. I even looked at some of the similar questions and nothing.

[ryder100]

one of my colleagues has had same problem of shingles, its so painful and irritating :(

[concerned621]

My understanding of shingles is anyone that has had chicken pox as a child is prone to shingles. I realize what their diagnosis was but perhaps it wasn't correct. I think it's worth checking out. I saw a special on shingles and it's one of the most under diagnosed issues around. One reason is the vaccine for it is insanely expensive.   My aunt had shingles and hers was in her vagina, very awful situation.  So I think everyone  is different.  I had a case of it 2 years ago, I was 46 at the time.  It may run it's course however it is a virus that lies dormant and if you have it, it will always be in your body.  From what my doctor and my research has told me.  By older adults what did you mean?

[Tuckamore]

Good thought. However shingles is very different from subacute spongiotic dermatitis, even in presentation. It's found primarily in older adults.

Shingles is localized and is easily diagnosed as it is so common. It will follow the path of a nerve(s) and is commonly found on the upper torso. It's usually contained to one side of the abdomen spreading into the back. It normally runs it course in 3-6 weeks.

[concerned621]

It sounds like it could be Shingles.  Shingles is a virus that stays dormant in our body. Did he have chicken pox when he was little? if so it could be shingles.  Get to to a family doctor, there is a vaccine for it and I think anti-biotic.  I use a topical cream that is amazing for pain and rashes. It's called Nutra Skin & Joint Ultra Relief MSM Cream. Search it on the internet.  It works! Have him put it any where he hurts and anywhere the rash is.  But get to a doctor and ask about shingles.  It's very painful and usually accompanied by a rash.  Good luck.

[Tuckamore]

Hello Leanna,

Welcome to the Pain Management Forum. I am so sorry to hear of your husbands pain and the disruption it has brought to your lives. That is the face of chronic pain.

I would assume this he is being followed by a Dermatologist. Has he had a consult with an Immunologist? If not I would encourage you to request one for a thorough clinical evaluation. In my opinion you would want to rule out any possible systemic conditions that may be contributing to/or going hand in hand with his condition. A Rheumatologist may also be helpful in evaluating his overall clinical picture. These specialties should be able to determine if his pain is related to his diagnosis or if there is something another systemic problem.  

We have a Dermatology Community Forum at MedHelp. I just checked and there is some activity on it. It's worth a try. I would consider posting on it also.

It sounds like his physician is on the right page with the Neurontin. 300 mgs is a small dose and he may require an increase. It is normally started low and increased as needed. My mother was on 1,200 mgs for an Ulnar Nerve Entrapment post CABG. His physician may have just began at a low dose and will increase it until pain releif is obtained. It makes sense that his pain may be due to nerve ending irritation or inflammation but I would not rule out other factors just yet.

What I am suggesting is to thoroughly investigate all possibilities with the different specialities. At the very least he should request and received pain managment until this flare has subsided. Maintaining employment is difficult when you have horrid chronic pain. Physicians should recognize this and order medications accordingly.

Your husband is very fortunate to have a concerned and supportive spouse. Every person that experiences chronic pain will tell you that the support and understanding of those that we love are vital in our well being.

Please let us know how your husband is progressing. I will look forward to your updates with interest. We are here to support you and him. Don't forget to take care of yourself too. Those we love often suffer as much as we do. Best of luck.

Peace,
Tuck