New diagnosis long term pain

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YLSarah
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/15/2017 3:22 PM (GMT -7)   
Hey there,

I'm 36/Female who has had ten long years of chronic back, hip and shoulder pain my family doctor has recently diagnosed me with the following:

Fibromyalgia dianogisis and on nortryptline for pain management;
Recent gastroparesis and hiatel hernia, GERD; on several medications for same; (ended up losing 30 pounds since July 2017)

Double microdiskestomy L4, L5 level on April 28, 2017 with a 15% reduction of pain.

I am in so much pain (flare) that I can barely walk. It's useless to go to my emergency dept but that is how desperate I am now for pain relief.

I am reaching out for ideas and help and also joining a support group in my area as soon as I find a local one.

Post Edited (YLSarah) : 9/15/2017 4:33:10 PM (GMT-6)


Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2660
   Posted 9/15/2017 7:10 PM (GMT -7)   
Hi and welcome, YLSarah! So sorry you're in so much pain. sad Just wondering if you've told your doctor how bad your pain is, and how hard it is to deal with? You could phone your doctor's nurse and tell her how you're feeling and ask for advice.

In the meantime, have you tried anything like warm baths or a heating pad? It's probably warm outside where you live, but those can sometimes still help.

Yes, walking can be so tricky in a flare! When I'm in a bad flare like that, I slow down, but still do some walking to keep from getting more stiff. Not easy, I know, but my body generally 'thanks' me for it!

Distracting myself helps my pain sometimes: crafts, prayer, reading, funny movies, etc..

This is a great forum. The very first post here (Fibro 101) has some good ideas. A support group sounds like a great idea, too.

Best wishes and hope you find relief, and also keep posting.
"Pray, hope, and don't worry."

St. Padre Pio

dmb124
Regular Member


Date Joined Sep 2016
Total Posts : 26
   Posted 9/15/2017 7:20 PM (GMT -7)   
Welcome! I'm sorry to hear you are having such a hard time. I hope things get better for you soon. I was diagnosed a few years ago and thankfully have a great rheumatologist. I get relief from massage, chiropractic care, and sunlight. I also take vicoprofen & Cymbalta. When I'm in a flare, I use heating pads on my legs to help with the pain. Some days nothing seems to help. I've discovered I feel much better if I stay active but not overdo. It's a hard balance to strike.
I hope things start looking up for you.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 9/15/2017 9:24 PM (GMT -7)   
Hi ,

Welcome to the forum

Sorry the pain is so bad right now,

You can get better..

dmb is right about finding that balance between , not moving enough and doing too much..its like our bodies have a sweet spot..ha ha

Stretching is really important to our tight muscles..

We often need some help with pain levels..do you take anything?

Have they checked your vit d levels..at one point i thought my fibro was getting so much worse, but found out my vit d had dropped too low, and to keep that normal makes a big difference.

Magnesium and malic acid help with fibro

Epsom salt in water feels good

One thing i know many of us say..drs can help you to a point, at times we need a little physical therapy...but we can each find self help measures that help us more.

I was reading from a dr..who has fibro and she said that massage with myofascial relief technique really helped her.

Lj

YLSarah
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/15/2017 10:15 PM (GMT -7)   
Thanks for the messages. Vitamin levels were checked. B12 is at the low end but not enough to warrant shots. I'm going to have to book some PT as I'm wrecked with nerve pain and muscle spasms. I'm also going to invest in some heating pads. Do you use the electric ones? I've read the forum post and it was very helpful.

I have no other meds. They are on a really really huge no narcotics kivk, she wouldn't even prescribe muscle relaxants. I'm considering seeing a different doctor at a different office.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17523
   Posted 9/16/2017 9:16 AM (GMT -7)   
Hi, YLSarah, and welcome! I'm so sorry you are dealing with all of this. about six years ago my back, hip and shoulder pain got worse and worse. I developed shooting raw nerve pain down the inside of my legs and I pretty much couldn't walk. I used two canes to walk! The pain was enormous and when I just lifted my foot an inch to take a baby step, I had tears running down my cheeks. I even was barely eating or drinking anything so I didn't have to walk to the bathroom! I live alone and was getting quite nervous about this. I thought I might have to sell my home and go into assisted living.

I saw a good board certified rheumatologist and he did many x-rays, took 8 vials of blood work, and took an extensive family history. I was diagnosed with ankylosing spondylitis and sacroiliitis along with fibro and he put me on ibuprofen, Tylenol, and a muscle relaxer called Robaxin that has made a significant difference in my pain. I now can walk without pain and no canes either, I sleep so much better, and I can carry on with normal activities...but I do pace myself.

Robaxin has been around a long time. I took it back in the late 1970's and early 1980's for low back pain. My prescription said to take two tablets every six hours. I took one tablet every six hours then moved down to one every eight hours and I now am at a maintenance level of one every twelve hours....before breakfast and dinner. I don't get groggy at this low dose but it has done it work in me! I can drive and carry on normally.

I know you don't have the same diagnosis but with extreme pain your muscles are tightening and you said you were having spasms too. You might ask your doctor about taking this. It's generic name is methocarbamol and it's not very expensive either.

I do hope you get relief soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 9/16/2017 9:31 AM (GMT -7)   
Pt might help some , try to find a Pt who works with myofascial issues..

That might get you loosened up enough to help yourself.

Some of the people here see a pain specialist..

For me, they wanted to give stronger drugs that i just cannot take.

So that was not a great answer for me, but it helps others..

They often say moist heat for fibro, but just a reg heating pad does the same thing for me..

Also, theres a book called the trigger point therapy book, which i learned to use, cause sometimes we are in too much pain to wait three weeks for an appt. it teaches you to relieve myofascial points at home, and i can sometimes release a pain point in minutes and not need the pt

dmb124
Regular Member


Date Joined Sep 2016
Total Posts : 26
   Posted 9/16/2017 1:45 PM (GMT -7)   
I use regular heating pads, also.
Michele

Fibro, RA, GERD, hiatal hernia, migraines, TMD, hypermobility joint disorder

kchw496
New Member


Date Joined May 2017
Total Posts : 17
   Posted 9/18/2017 7:13 AM (GMT -7)   
Rockon said...
Hi, and welcome. I'm sorry to read about how much you are coping with. There is an alternative diagnosis that you might read about, since it could cover some of your problems that you have comorbid to the fibro. Maybe when you get a good day, check this linked info out and think about if you could have Mastocytosis or mast cell activation syndrome? Mast cells are immune cells that can over activate in some people.

Think of mast cells as a soccer ball filled with ping pong balls. Their contents: a large number of chemical molecules. They stay in their one area, serving kind of as a border patrol, but of a small area. In good times they are on the lookout for perceived enemies, like pollen or pathogens. They can go off like a bomb, releasing all of their chemical molecules, which is called degranulation. Or they may release just some of them ("selective degranulation"). The problems arise when they are trigger happy. Chronic chemical warfare is tuff on us. They are also nearly everywhere, so if several phenotypes (location species) get trigger happy, it can have quite an impact.

Among the numerous molecules that can be released by mast cells are some inflammatory cytokines, heparin, histamine, leukotrienes, prostaglandins, tryptase, proteases; over one hundred different types of mediators, possibly "hundreds".

Best signs/symptom list I have seen so far, published in 2016, World Journal of Hematology, by 2 leading experts, Drs Afrin & Molderings. There is also an article with criteria and a questionaire to use towards making a diagnoses, but hold off on reading the whole article, I don't know that it's necessary to get technical.
Just don't ever assume your doctor would of course know much about this topic. That is unlikely. And they often get testing wrong.
www.wjgnet.com/2218-6204/full/v3/i1/1-T1.htm
==== ==== ===== ===== ====

It's certainly not any better than fibro as far as symptoms go, but I believe it is better for some people to take a little bit more time, just to reconsider what needs to be treated first, and how. Possibly some of us spent years off-track, perhaps using the wrong meds, picking away at this or that symptom. MCAS/mast cell activation syndrome, is a very newly recognized diagnosis (2007), with more research to be done, and more importantly, much of the research that has been done, has not been in the journals your doctor(s) reads. It's a bit spread around, journal-wise.

I would not suggest reading the whole thread, but if the topic interests you then search for "Reference thread" at myPatientMatch, (.com) for more info. Some of it will simply not apply to everyone. But at the fifth face/avatar, the section begins "For the fibro patients...", and I put some related fibro/mast cell research there. It's not definitive, but it is certainly intriguing.
________________________________________
The Mastocytosis Society's site (linked) lists gerd as being associated with mast cell problems. I also have encountered patients with both eosinophil and mast cell problems. Eosinophilic esophagitis (EE) and gastroesophageal reflux disease (GERD) have overlapping features, so for some people it might be something to consider, I don't know what you'll think, or what tests you have already had done. Plus it's not something I read much about, since I don't have Gerd.

Both eosinophils and mast cells are granulocytes, meaning they release granules of mediators, and both may be attracted to a site via the same mediators, through something called chemotaxis. I think of that as chemical attraction.
The Mastocytosis Society here
/tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

I do see people in my mast cell groups with gastroperesis, but I know of no known direct connection to mast cell disorders. I just checked, and I see that Lisa Klimas (she writes "Mast Attack") has written a couple of brief blogs about gastroparesis, and since she does not claim a mast cell connection, I imagine there wasn't evidence of one (at the time of publication at any rate).

Reading her blogs, I was thinking that it makes sense that for some people gastroparesis could be part of their disautonomia, with some autonomic system neuropathies perhaps? Neuropathies are not unusual in fibro/mast cell disorders. And connective tissue problems also makes sense for others.

However, along those lines:
"Activated mast cells contribute directly to neuropathic pain by releasing algogenic mediators after degranulation [50]. Resident peripheral nerve mast cells are the first cells activated at the site of nerve damage and contribute to the recruitment of neutrophils and macrophages [51]." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3481533/

My point being that mast cells do affect nerves.

Acetylcholine is a neurotransmitter, and when enuf of it is released at a presynaptic point between two nerves, then Ach sends "contract" signals for muscles. I don't see the acetylcholine/Ach discussed much in fibro circles, but it has been talked about by some ME/CFS patients. It's uncertain how far removed from fibro ME/CFS really is. There is a med call Mestinon that affects acetylcholine, and some ME/CFS patients have tried mestinon. It does not work for everyone, but Cort Johnson has one blog (prolly at HealthRising), that may be titled The Mestinon Miracle?

I have seen mast cell patients discuss Ach. In fact just yesterday, once again. Some people were writing that they have too much, some too little. I had a pesticide exposure, one which gets stored in fat, and gradually metabolized into other named molecular structures, and the pesticide's metabolytes can affect acetylcholine.

In my "Reference" mast cell thread at myPatientMatch (search for "reference") there is a little discussion of the various histamine receptor types. While the possible affects of Ach are perhaps interesting for a person with gastroperesis to consider, I also want to bring up that topic because should you ever need to try benadryl (which can be a great medicine in certain situations), it is also anticholinergic (anti-acetylcholine). An important point to know. If you should use it, I want to mention that you should watch to be sure it doesn't turn out to be a problem, possibly exacerbating the gastroparesis.

Final warning,
Some fibro patients are put on the med amitriptyline. (It turns out that it has now been found to be a mast cell stabilizer, by a team with one of my favorite researchers, Dr Theoharides.) I took it for 20+ years. It could slow gastric emptying, according to one gastroparesis blog from Lisa Klimas.

Plus most drs have either not learned or not acknowledged that amitriptyline is mitotoxic (toxic to our mitochondria), bad for CoQ-10 levels, and has a bad effect on fibroblasts, which are associated with making connective tissue).(I have those studies at a thread at myPatientMatch).

Nortriptyline is kind of like a metabolite of amitriptyline...so it's similar, but a next generation. I have no idea if it is mitotoxic, because pharmaceutical companies do not have to prove that meds are safe for mitochondria. I did not see nortriptyline on the mitotoxic med lists, but personally, I am not comfortable with it anymore. I have considered another Tricyclic antidepressant that mast cell patients use, but I am feeling a little gun shy about the entire class.
FYI
If you or someone else reading this didn't know it: Mitochondria are the energy factories of our cells. There is some study evidence of mitochondrial problems in fibromyalgia. I recently posted an article here at HealingWell about how medical journals will not publish studies showing meds are mitotoxic.I got that article from a neurologist that I follow on Facebook, who is focused on biohacking the mitochondria,or as he calls it, mitohacking.

I hope you find some tools to help you alleviate some of your symptoms. It certainly is challenging!


For those interested, there is a research article on the CoQ10 lowering effects of amitriptyline. The research also shows that ami lowers ATP levels. ATP provide energy for our cells and CoQ10 helps facilitate an important step in the ATP production process in our mitochondria. Low CoQ10 leads to low ATP.

Research: https://www.ncbi.nlm.nih.gov/pubmed/22118833

Thank you for bringing up this important point. If someone is on ami and it's bringing relief, then definitely consider supplementing with CoQ10 to help counteract the effects.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15289
   Posted 9/19/2017 11:56 AM (GMT -7)   
Hi, I just saw your post & wanted to pass on a couple of ideas for you. I know you had some micro-surgery done on your back. If at all possible get in a heated pool, perhaps at a gym or YMCA. Water therapy is very helpful for many, especially folks that have had surgery. Just get in the pool & move around such as walking in the water. You are weightless & cannot injure yourself. May be possible to get your dr to rx a script for pool therapy.

Moist heat works well too. I nuke wet hand towels in the microwave, you have to be careful they can get pretty hot. Also, they sell moist heating pads. I have found moist heat tends to feel like it goes deeper over dry heat.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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