Chronic Fatigue Syndrome Support Group

My pains have started with 16,5 years in the train (draft) to the Secondary School. I have got pains in the eyes and face. Doctors told me, I have Sinusitis. I went to ENT doctors, they gave me therapy but it didn't help.

As I was always tired and sleepy, later with 25 years I have found (in abroad) Neurologist, who gave me injection into right neck muscle and all my pains were away. He told me also, that I have Neuralgia. It was good for 5 years.

When I came back from abroad, my pains came back too.

After that, since 1989 I am searching the cause for my pains. There are more comments for my pains: I have trigger points all over head, face and neck (in some connection with Sinusitis); my pains are from neck muscles (there is often pain in the right neck muscle); from the liver (there are few cysts); from shoulder joint (on the humerus is some ligament), from bad digestion (should be cause for muscle tension).

On the end I don't know where the cause is. I only know that I have very poor head circulation; that I can't open my eyes after washing hair, before weather is going to change and the worst for me is draft.

Because of all, I don't work since 8 years, I have lost my money, live alone. In fact those pains have destroyed my life.

My medicine: in the morning I take some special drink, one Calcium pill and 1 pill for thyroid (I have also small thyroid since my birth and have hypotireosis). In the evening I take Rivotril (for ATN), Naproxen and Sanval (for sleeping).

In last 1,5 year have made 3 head MRI, 1 head CT; one neck MRI and one neck CT scan.

Head MRI shows, I have cerebral atrophy and some blood vessel on the skull bottom.

Neck MRI shows, I have some narrow space between C5 and C6.

After all, I have nobody to help me.

Can somebody tell me, what to do?

Thank you,

Stella

Are you on any kind of medicare or medicaid? If not, then perhaps the state you are in could give you some sort of aid. Many can help cover the cost of care, or you could look at going to a free clinic, or get a free consult for care at a hospital. Many places will do some pro bono (charity-type) cases for patients who have no health care and can't afford it, and many medications can be gotten for little to no cost if you know where to look, but you really have to do the hard leg-work ahead of time to find it.

As for what is going on, I think I may be a little confused by everything that is going on. It doesn't sound as if it is CFS, but it could be, because you're talking about pain spread over many years, it would be difficult to know. I'm sure that you haven't given all of the details, and perhaps you can't remember them all. It sounds like you have a lot of things going on, and you could possibly have fibromyalgia, in which case, you COULD have CFS as a secondary issue. If not, you could have several different illnesses or one primary causes other things to go wrong.

I would suggest an appointment with a doctor to help sort it all out, as I know we can't help you here.

Welcome to the forum, however, and I apologize for not getting here to welcome you sooner. I have been on vacation, and after getting back, have been tied up with family issues. Please let us know how you are doing. If there is anything I can do for you, be sure to send me a PM, or simply make another post.

*hugs*

jen

Here is the muscle it should be the cause for all my pains.

Here was Neurologist, Chiropractor from 1997-1999 and he told me, how is going with my pains:

The neck muscle has pressure on the nerve Sub scapular (comes between C5 and C6), the nerve goes up into Sinusitis; from Sinusitis I have atypical Trigeminal Neuralgia. It makes me total unable and tired. I am in bed every Saturday after washing my hair because can't open the eyes.

Kind regards,

Stella

If one muscle is the cause of all your pain, and you have trigeminal neuralgia (which is a disorder of a nerve in your head that causes facial and other head pain), I think it unlikely that you have either FMS or CFS. It's possible, but not without a lot of other things going on with you.

Trigeminal Neuralgia is often misdiagnosed, so I doubt seriously that you actually much in the way of sinusitis, to be honest. It's probably more of an inflammation of the trigeminal nerve which causes much of the sinus symptoms and the pain you suffer with the "sinusitis" episodes. But that's JMO, of course, and I'm not a doctor. TN can cause simple things like you (or someone else) touching your face or washing your hair to be extremely painful, and I can see why you would be bed-bound following the exercise.

Medications that help with TN are typically anti-seizure drugs, opioids, and anti-depressants, so you do need to find someone who can prescribe you these types of drugs when possible, if it means finding a free clinic, or whatever you can do.

Here's a link to some more info on TN:

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

Here's the MDJ group for TN, I think it would benefit you to join there and see what others do to help with their pain:

http://www.mdjunction.com/trigeminal-neuralgia

I hope this helps some! *hugs*

jen

Thank you again for kind reply.

I don't have my computer so I come here, when I can.

About TN: it is TN but atypical. I am taking every day CLONAZEPAM or RIVOTRIL (one or two), but only in the evening as it makes me very tired during the day. Together with this pill I take one Naproxen and one pill for better sleep. This combination is good, because I get asleep. It is bad because my muscles are becoming soft and have to go every two hours to the toilette (for urine). I am sure it is because of the muscle, but don't know why the muscle is always in tension? If you see that picture, that is right. I have pains also all along my shoulder blade until upper part of the right arm, where are some ligaments.

That is also reason I am looking for Research Centre to see all the connection. More doctors (they are specialists and chiropractors from Russia) as also other people doing alternative healing told me, that my liver is not ok. There are some cysts, but nobody cares about it.

I have tried all possible food, teas and herbs. Nothing helps except pills with Hydrochloride.

You write about TN: as I know people with (only) TN don't have swollen face; they can open their eyes (I can only with pills for nose mucus membrane decongestion from UK and they have ephedrine hydrochloride).

All that means I have:

1. Very old and never healed two sinusitis (ethmoidal and maxillaries),

2. TN from the sinusitis,

3. Pinched neck nerve between C5 and C6,

4. Swollen levator scapula muscle.

I think very often: it is much better to be dead than to suffer all that. Before that I would like to tell my health story because it will be 20 years in September, I am looking to solve this problem. Also 8 years without anything!

Kind regards,

Stella

Ok, I am getting more of your history now, and I am understanding more of what you are saying. It's sometimes hard for me to get everything the first time around. Sounds like you need to be on the back pain forum, and the TN forum, more than CFS. I still don't know that I would think CFS/FMS, but I agree there's more going on than TN.

It sounds like you need to have something done with the pinched nerve, but if it's due to a muscle that is too tight and pulling your neck out of position, then small things such as massage, cranio-sacral therapy, or another form of bodywork (Alexander Technique, etc) might be enough to relieve that problem alone. The muscle may be swollen just from the knots in it that need to be worked out. You'd be amazed at what a good bodywork tech can do for you, and how much swelling will be released when they are done.

It sounds like you had sinusitis that turned into clogged sinuses, and that may even require surgery to clear at this point. You may have a problem with your septum, which is the piece of cartilage that separates your nostrils into two sides, like a deviated septum, or something like that, which can cause a lot of problems, or if you've ever had a broken nose, it can lead to what most people consider only cosmetic problems, but they can actually be more like what it seems you are suffering from. What the surgery would do is basically "vacuum" out your sinuses so they are clear and no longer stuffed up, and you can breathe better, and you won't get the infections you're getting, and you won't be suffering so with a puffy face, etc. If that's what I'm understanding you as saying, it may be that you need something like that.

It may be that you still have TN, regardless of what happens with the sinus issues. Some people can never fully relieve the TN, so I still recommend you consider that as a possibility, that you may still have to suffer from it and find a way to live with it, or at least take medications for it for the rest of your life. It may not be something that is related to the sinus issues, or it may have started that way, but may not still be. Does that make sense?

I hope that helps some, but as we're in different countries, I'm not really sure, other than talking things out with you, what more I can do. I think you know what you need, and who you need to get help from, I think I'm mainly helping you to sort things out?

And I hope, FWIW, that is of some help! I think at least pointing you in the right direction of what you may/may not have is helping. The problem with any surgery you may have to undergo would be the liver issues. You need to have some blood work, perhaps undergo an ultrasound to see what the cysts look like, and perhaps a biopsy? It would be up to the doctor you see to decide what needs to be done for sure, but that is what I'd guess they'd what to start with. Also, there are supportive drugs you can be taking in the meantime, things for liver support that will help to keep you from having problems. And, you should remember that the more naproxen you take, the worse your liver is likely to be, because it can cause liver damage. So, getting on a liver support NOW would be a great idea. If you need some ideas as to what you might want to look into trying, please let me know, I'm pretty familiar with natural supplements.

*hugs*

jen

You are angel! I am sure if I was close to you that you would help me.

I am very disappointed about my pains because it lasts almost all my life. I am tired, may not walk for long time as I get immediately sleepy and painful eyes. It is a bit strange, I know. I don't understand doctors here they don't believe me and at the same time, they don't help me.

There are enough diagnoses I have, but they don't help me either.

Very often I am thinking about death, but have to think about other people.

About deviated Septum: I had the operation, April 1990 and since then I have more pains in that area. I don't understand that there is steady sharp pain in the right eye, like a knife bite: every day! The same time I get puffy and strange pains.

I don't understand that there are always cheek- and jaw pains as well.

About pinched nerve: I have read in one Forum (from the ex-country) that one female person had paralysed nerve from the draft back in the head and she has got some blockades with injections as also some electricity to get free nerve from the muscle. I am not there I am here where they hate us from other countries. Believe me, I wrote to many important people here but only two wrote me back: one gave me some advice and other wrote, he is not responsible for the area, where I live.

For me I see two solutions:

either to speak with someone and publish it in all Europe or to die!

The last one is very difficult solution.

I am studying Medical Astrology since end of the last year (Astrology since 1996) and therefore want to be normal and help to other people. I speak German, French and a bit Spanish (need more, but have no energy for anything).

On the end I must say, that eyes and cheek bone pains (probably the same time started also TN, but nobody told me) I have since my school days. The other pains from the neck started 1992.

About liver: I need right food and some medication. Nothing else!

If there are some pills for muscle spasm, I don’t know please write to me, what is their name.

Kind regards,

Stella

Yes, electro-stimulation therapy, or "e-stim" as it's often called, can be VERY beneficial to people who have muscular pain. It can help to stimulate the muscle to move better, and relieve the pain. It can work on muscles AND nerves, so it may be great to help with your neck pain. The nerve blocks are most likely epidurals, which are often used with neck or back pain, and they are used to relieve the pain as well. They go into the nerves, I believe (I haven't had one, so I could be mistaken), and they help relieve pain for several months. Unfortunately, they are not permanent solutions. It often takes several (usually about 3) injections to resolve the pain fully, and they often wear off within a few months.

I'm not at all surprised you are tired. Pain is exhausting, so it can cause people to feel symptoms of CFS. Perhaps you do have CFS. It's unusual for someone to have CFS when you haven't had EBV, or don't have a "normal" corresponding disease process, which it doesn't sound like you do, but I think you may very well have it. It's a good possibility at this point. Pain causes severe exhaustion, and it's because your body's working so hard to overcome the pain, and then to do all the other things it needs to do to get you through the day as well. If you aren't getting good sleep at night, or you aren't reaching REM sleep, or if your body isn't able to repair itself at night through the pain, then you aren't really healing properly, and that's a real drain on your system.

It sounds like when you had the septal surgery, something either didn't go right, or they didn't do the right follow-ups with you. I think your cheek and jaw pains are either related to the TN (that's very common!) or are related to the sinus issues, or possibly both.

Please know that you are cared for, don't think about death, just keep going. It's hard, but I feel that you will find the solution you need. I really do!

The medication that you can take long-term for muscle spasms is called Skelaxin 800mg, one pill twice daily. It's only available here in the US by prescription, but I'm not sure how that works overseas. It shouldn't affect your system, how you feel or anything like that. You should be able to take it all the time, with no ill effects. It might affect your liver, but it might help you not have to take the naproxen all the time, too. There are probably some good naturals I can find for you, if you let me know you want them. I'll look around and see what I can find.

If you're interested in a good liver support supplement, let me know. I've got some great naturals you can use. Just a thought, there, too.

How much longer do you plan to be living where you are now? Is there another place you can move to, and when?

*hugs*

Jen

What are symptoms of CFS?

I didn't tell you that I have also Hypotireosis: I was born with small thyroid. About that, told me doctor in Austria hospital, 2005. My first search for help was just asking about my thyroid, September 1989 and there was wrong with it. They gave me Hormone pills. Every day I take 1 1/2 of the pills.

1993 I had x-rays from my entire spine. There are lots of vertebras used as also two ligaments: ligament nuchae (on the neck side) and the long one on the back spine. For that I have no medication. From 1996 till 2002 I went regularly to the Chiropractors and they did help me for the spine but nothing for the neck.

I was told 1993 from both doctors:

1. My pains in the eyes and face are not from the neck;

2. My pains are not from the thyroid, they are from the neck muscles.

When I had EMG from muscles, 1998 and 2001: Levator scapula and also from muscle Supraspinatus: EMG was OK. I have pains on both muscles and don't understand anything. Where from are my muscles in tension?

I am thinking always where have I got injection (in the right neck muscle) from Neurologist in Germany and what for? Believe me; my pains were away in 10 minutes. What could it be?

I don't have photos from that time (all my papers are destroyed, 1995) after the war was over (in Croatia) to show how there are: no swollen face, no pains as also I wasn't tired at all. My Look was normal, as I was born.

About moving from here: I was trying to move to England from 2003, until last year but it didn’t go. I am very unhappy here and want to go anywhere: Ireland, England, Spain and France and never come back. What is worse for my health: also because I have nobody here I am crying every day. Those people are very selfish.

Kind regards,

Stella

I feel for you, sweetie. It sounds like you are living in a very rough situation. Again, I wish I could help you. I am trying to move, just into a different city, and for us, even that is difficult at the moment. Money is a tough situation for us, in this economy right now!

As for symptoms of CFS, here's a brief description:

Fatigue that is medically unexplained, of new onset, that lasts at least 6 monhts, that is not the results of ongoing exertion, that is not substantially relieved by rest, and that causes a substantial reduction in activity levels, plus 4 or more of the following:

1.) substantially impaired memory/concentration

2.) sore throat

3.) tender neck or armpit lymph nodes

4.) muscle pain

5.) headaches of a new type, pattern, or severity

6.) unrefreshing sleep

7.) relapse of symptoms after exercise (aka postexertional malaise) that lasts more than 24 hrs

8.) pain in multiple joints without joint swelling or redness

One known causes is the EVB (Epstein-Barr Virus). When symptoms persist for 6 months of longer following the virus, then it is considered to have become CFS. There are other causes, including FMS (fibromyalgia), Lyme disease, and any number of other diseases. There are people who will tell you that CFS can't exist if there is another disease process present, but I and many doctors will disagree with that. CFS is a syndrome, which is a collection of symptoms that when one is found, it can help lead to the finding of several others, if one looks hard enough, thus that one symptom can help diagnose the syndrome and help the patient find some answers. But it's rare for CFS to exist alone, without either EBV or another disease process. With everything you have going on, it's quite possible that you have it, given all your exhaustion and the things you have been going through. It exists quite often alongside other painful and debilitating conditions, of which (as you may know) there are a number.

If you aren't, you should continue to have frequent tests on your thyroid hormone levels to ensure you are getting the appropriate dosage of medication, as your levels can change over time. Most doctors here in the US recommend checks about every 6 months to a year, depending on how you are maintaining. I know you are not in a situation where you can do much, but once you get where you can, that is probably going to be something you will want to do.

That the chiropractors helped with your spine and not your neck doesn't surprise me, as they don't often help with muscular issues, but bone alignment. I would agree that your pains in the face and eyes are not related to your neck. I suspect that is the TN, which is from a nerve in the face/head, and from your sinuses, from what you've described to me. And I doubt you are having pains from the thyroid. A small thyroid shouldn't cause you pain. I suspect your neck pains are from the muscle that is tense. You may not feel a tense muscle, espeically when you've been living with it for years. The problem with pain is that it can often be referred pain, meaning that pain in a muscle can refer pain to another area of the body, such as a muscle over the shoulder can refer pain to your neck, by pulling on your neck, or by causing so much tension that it is tightening things to pull your neck out of alignment.

I believe your injection was most likely an epidural, similar to what is given for childbirth. It is given in many different painful situations. It usually is given into a nerve and serves as a block to knock out pain. While they are successful in many cases, the blocks don't last forever, and you will end up in pain again at some point, unless something else is done to resolve your pain on a more permanent basis.

I am hoping that at some point you can move. One thing I hope you will remember is that depression will not help your pain. I hope that you will come to the conclusion that you must move through it and accept that for now, you have to keep moving on, and you have to put one foot in front of the other. Try not to be so depressed. You have a friend at least in me, who is willing to do what she can to help in whatever way she can help. I hate that I can't do more, but I will do what I can for you. Together, we can figure something out for you, I'm sure! Don't give up, and try not to be so depressed that you'll never find a way, for I know you will! While you have no one there, you have me here!

I think that you will find if you give yourself a bit of a break, and you don't expect everything to happen right now, you will feel some bit of a relief in the pain. I think because your pain is in your face and head, the more you cry and give into that desperation, the more pain you will be in. I'm sure that can't be good for you. But, trust me, I DO totally understand. And I know that every day won't be easy to not cry. But try to keep your chin up as much as possible, and know that you have people out there who care!

Love and hugs to you, my dear,

Jen