Connect
What Is Wrong With Me?
Dr's don't know what is wrong with me. About 2X annually I fall ill with symptoms which generally keep me in bed from 5-10 days in a semi conscious state, unable to get to the bathroom, unable to eat drink, converse, etc. I just lay in bed falling into and out of consciousness for days on end with a severe headache, dizziness, and weakness. It usually starts with a headache at the base of my skull that progresses up to my ears and then to the front of my head as well. I am too dizzy to walk and sometimes the dizziness prevents me from moving on the bed because I feel as if I am falling into a deep hole. I am also nauseated and vomiting so I cannot be left alone and need constant care during this time. My concurrent conditions are autoimmune Hashimoto's thyroiditis which I have had for about 35 years, collapsing vertebra in my neck, tinnitus, some kidney disease, and Lyme Disease for about 30 years. I can't take OTC pain meds easily because I have side effects. They don't work on the severe pain anyway. I have always believed that the recurring condition was due to Lyme, but now I am not so sure because some of the previous Lyme symptoms like migrating pains have been absent for a while. About 20 years ago I had two molars capped so I am wondering if they are a possible cause since the headache/dizziness/complete breakdowns didn't occur until about 15 years ago which was already 15 years into my Lyme disease. I did have x-rays of my teeth but was told that nothing unusual was visible at the site of the caps. Or maybe I have one of the other diseases that piggyback with Lyme like Babesia or Bartonella. I have had complete headache clinic workups and my Lyme titer years ago was not high but the Lyme test was not necessarily expected to be very good at diagnosis at that time. In 1988 I was bitten by a tick. It was engorged. I was sick with a flu like illness afterwards. I had certain known symptoms for years but the relapsing headaches, nausea, complete breakdowns were not part of the symptoms at first. I am lying in bed as I write this having just had a relapse starting several days ago. I thought today was the day I would get up and conquer my world but although my headache and nausea are better I am still wiped out. My heart is pounding with any effort at doing normal things . I just don't know who to see for this. If I go to a rheumatologist for knee pain (probably Lyme related), knee pain is what will be addressed. If I go to a GP I will be given a list of specialists, each of whom has tunnel vision within their own profession.
This is a mystery that doesn't seem to be solvable. Sure, I can go and have my capped teeth removed, but if that does not relieve the problem I won't be able to chew very well which I would happily exchange for feeling better-if it was the problem. If not, then I am just adding another issue. But I don't know what else to do. I keep thinking I am near death when I have these episodes because they are so bad. Sooner or later I may not be resilient enough to recover. I am 76 years old.
Like
Helpful
HugInterested in more discussions like this? Go to the Just Want to Talk Support Group.
Connect
@krisjb1 My physical therapist can just feel with her hands to see if my vertebrae are aligned. You have to lay on your back, so the muscles are on slack, and then it is possible to feel it if the lateral spineous processes are aligned. A good manual therapist can do this. Then if they figure out what muscles are too tight and pulling it out of alignment, these can be addressed. My PT does myofascial release to loosen the muscles and get it moving properly again. Here is our MFR discussion.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
You can search for provider at http://mfrtherapists.com/
I do think your experience and mine are very similar. I don't have deterioration at C2 through C4, but issues because of muscle spasms. If there is spine deterioration there, it can probably contribute to the issues. I have been helped a lot by my physical therapist and have learned a lot from her. You're welcome. I'm glad I could help.
-
Like -
Helpful -
Hug
3 ReactionsI am not nervous about the experience itself, so don't need Valium or anything to make me calmer. Just the fear of the sound level issue causing more tinnitus is stopping me. It is amazing that you have no increase in tinnitus after so many MRI's. Do you attribute your tinnitus to noise in your past? I think almost certainly that mine started with noise in my teen years and has gotten worse over time with more exposure.
-
Like -
Helpful -
Hug
2 ReactionsThe MFR sounds like it could be of help . I am wondering how to find the right therapist. Is there a special certification I should be looking for?
No worries about creating more concerns about Lyme and so many of the other diseases that are related to tick bites because I have been infected since 1992 and done a lot of investigating. It is sad that you were not encouraged to have adequate hearing protection when you had those MRI's without plugs or earphones. The medical people who didn't limit your exposure need to be accountable for worsening your problems. Tinnitus is not fun.
-
Like -
Helpful -
Hug
2 Reactions@krisjb1 Good question! The highest level of training with the John Barnes methods are called "Expert" level. Therapists need to come back every few years for refresher courses and more advanced skill courses to maintain that certification and have completed a standard set of coursework. When you find a list of therapists at http://mfrtherapists.com/ , it tells you their certification level, and this list is only people who have trained with John Barnes and his staff. Some patients go to his practice in either Sedona, AZ called Therapy on the Rocks or to his other Pennsylvania location for intensive week long therapy. That is expensive, and some patients prefer to do this.
https://therapyontherocks.net/
I also just ran across the John Barnes You Tube Channel which you can see here:
https://www.youtube.com/channel/UCQzQ2H45q9mFHjyBAoWfoxQ
He's older now, and may not be practicing as a therapist himself now due to his health. My therapists is an expert level and she is fantastic. I tried the map in the therapist locator and when you click on the pins for the therapists it states on the balloon that comes up how advanced they are. "Expert" is the highest. You can also call Therapy on the Rocks and ask for a therapist in your area.
-
Like -
Helpful -
Hug
3 ReactionsLooked at several of the John Barnes videos. What his therapy offers is very different, but maybe different is what is needed when traditional methods are not offering what is needed. I will check on the prices for this therapy. If it works any expense is worth it. Is therapy usually weekly? Monthly? Ongoing until you feel better? There is an "Intermediate" level practitioner about 15 minutes away. Do you know if that qualification is enough to have her actually make a determination that there is a misalignment or do I need an "Expert" level person to make a diagnosis as well as treat. There are several "Experts" within 45 minutes drive. Is a diagnosis necessary? Is this type of therapy independent of the presenting problem-like a cure all? Hope this isn't too many questions. Very interested in getting better because I am struggling every day to do things that should be easy. Pain makes it hard to think too.
@krisjb1 I suggest look up websites of the different providers, and call the ones you are interested in. Ask them what specialized course they have had to work on your spine issues. Some have cranial - sacral courses. You can ask about their experience in rehabbing spine surgery patients. You don't need a specific diagnosis unless your insurance requires it for payment. The PT should be a good manual therapist who can put their hands on you and feel where the tension is in your body and be able to follow that path of tightness and unwind it with their hands. It's kind of like kneading bread dough where you push against the resistance, and then stop and hold it waiting for the tension to unwind. That is what is happening as the cobwebby fascia is releasing and stretching the fibers.
I find when I am really tight at least 2 sessions a week is best, and later I can go down to one. I also do self stretches at home because my PT taught me what to do, so that helps me advance faster than just waiting for her session.
The misalignment I talk about is due to muscle spasms moving the spine and holding it that way such as straightening the neck or rotating or tilting the vertebrae. That happens because the muscles are attached to the spineous processes. The PT can feel to see if these spineous processes are lined up correctly. If there is a degenerative spine problem with a lot of instability, a PT can't fix that. The PT also should be asking to see your report of imaging from your spine because if you have instability at C1 or C2, they should not put their hands on you because it can be serious and damaging to the spinal cord if a displacement or slipping happens with a lot of movement of the vertebrae. That is a question for a surgeon. Also this is gentle muscle stretching. It is not what a chiropractor does with force.
MFR can help problems having to due with tightness in muscles and fascia that cause patterns of restricted movement. Our bodies can get stuck in poor posture and bad ergonomics if we let that happen. Injuries and scar tissue also add to this problem. It gets things moving properly and reduces pressure on things that are compressed. It also allows body fluids to circulate and restore the dried out tissue and wash away waste products.
-
Like -
Helpful -
Hug
2 ReactionsI think I understand how it works and what to expect now. My first therapist choice told me that I would need to pay in advance for an August appointment ($250) and if I cancelled I would be liable for half that anyway. He gave me a referral after I said that didn't work for me because there are some days I would not be physically able to keep the appt and wouldn't know when that would be anyway. The practitioner I was referred to would have seen me next week-but only if I was fully vaccinated. I am not. I already had two Covid illnesses and have a high titer. Today I tried to make an appointment online with another practitioner, but after choosing a date and time got a message to call the office. I did. No one there. Left message. I really want to give this therapy a try, but so far no luck with getting an appointment within driving distance.