Another "is it fibro" thread

[Wisenut]

Hello,
I have been experiencing some difficult symptoms for the last 7 months and I am just starting to think these symptoms might be more than my initial assessment. I hope you all can help! I am just going to tell my whole story because I am not sure where the beginning really is. It maybe a long post. Sorry for that!

About a year ago I injured my shoulder and tore some connnective tissues. It was painful but my doctor assured me it was minor and to simply rest the shoulder and let it heal. About 7 months ago I started experiencing excrutiating pain down the left half of my body. At that time I believed it to be a pinched nerve related to the shoulder injury. My doctor concurred and we tried cortizone shots in the shoulder the relieve inflamation, chiropractic adjustments to relieve pressure and massage. I also bought a tens machine and used that. Relief was incrimental but eventually most of the pain was gone but not all!

Initially the "pinched nerve" was excrutiating. There were times when I could not sit or lie down because the pain was too great. If, however, I stood up and used a lot of over the counter analgesic cream and took 3 alleve after about an hour the pain would subside. I noticed that I had a lot of tension in my shoulders and back and thought it was stress. But my chiropractor thought that my super tight trapezeus muscle was actually pulling on my neck and pulling my vertebra into applying pressure to my nerve on the left side. (That is when we tried massage).

And then I had horrible leg cramps in the middle of the night. At that time my doctor did a full blood pannel and there was nothing concerning except my cortizol was high. He prescribed magnesium and iodine but other than advising I drink more water had no further advice. The leg cramps went away

Any way, I can't say there was one thing that cured the pinched nerve but eventually it did get better. I was still left with some symptoms though like stabbing pain in my hand, a hot spot at my tail bone, tender feet and super sensitive skin on my left side. But these also subsided to barely noticeable after a while.

After the intial "pinched nerve" I have noticed that my symptoms are cycliar in nature. I will be fine and normal for several weeks and then suddenly my trapezeus muscle turns rock hard and I get sudden "zingy" pain down my siatic nerve, I am suddenly clumsy, my feet hurt to walk, I can't grip things and I am fatigued.

A friend suggested fibromyalgia several months ago but I would read "wide spread pain" and dismiss the idea. My pain is almost entirely on my left side except my tight trapezeus and both feet hurt at the same time. Everything else is on the left. It is the fact that my symptoms seem to go though distinctive active and non-active phases that make me think a diagnoses of fibro might be correct.

Sorry this has been so long!

My husband and I retired early and live in Mexico most of the year. We pay for our health care out of pocket and do not have insurence. Getting a proper diagnosis is possible but I need to figure out how to talk to my doctor about it. He is an American working in Mexico so there is no language barrier. Are there tests I can suggest? He is a great doctor but might not think of everything.

Help?

 

[JayCS]

Hello Wisenut, and welcome -

I can well understand your need to describe these symptoms in detail.

And you are right, a certain amount of widespread pain is necessary for it to already be fibro, but also several of 6 further symptoms in a certain severity, see attached criteria for details.

Your description seems essentially to boil down to 2 local pains: Your left shoulder with many periodic related consequences and the cramps for one period.

For the cramps your doc did typical good blood checks and drinking and magnesium is good advice. Other too low minerals not mentioned could be sodium, calcium and potassium. There might even be a connection to the shoulder-consequences, if the cramps happened soon after them: overuse, "overexercising", fatigue, sitting/standing more of the leg muscles to overcompensate / protective posture for the left-sided problems. Also the high cortisol found in your bloods might well be due to the hydrocortisone shots, so another connection.
So firstly everyone gets cramps, secondly you got rid of them, thirdly they may be another shoulder-consequence and fourthly they are well possible in fibro, but not "characteristic", so negligible for the diagnosis, you just need to watch for them and keep them in check. You can also note in future if they may be connected to the cyclical shoulder consequences, and then learn to prevent by avoiding protective posture.

Now your big problem seems to me to be the consequences of the shoulder problem.
My ideas for that are:

• I'd interpret all other symptoms you've mentioned as consequences of the shoulder injury.
• That initial trigger doesn't seem completely healed, so I'd try the many other forms of physiotherapy to try to get to the root, as well as all the consequences, like:
  • Myofascial Release,
  • Scar- and Bonework,
  • Acupressure,
  • Trigger pointing / if necessary Jones technique
  • Osteopathy etc.
  • 
    
  • (instead of your chiropractor who may be great, but hasn't found it,
  • cortisone, which apparently in your case only managed to suppress rather than heal,
  • the TENS unit, which distracts, but apparently isn't healing either, so I'd only use it while you are not able to analyze the triggers).
• Tracking all of your following symptoms (hand, feet etc.) may help recognize the next flare, and perhaps what is triggering it, maybe a certain posture, action or activity and preventing or counteracting it.
• Whether pinched nerve or not, your symptoms all sound related to some kind of nerve injury, i.e. neuropathic, calling for a neurological exam. This can some day result in furthergoing pain, independent of any injury, but at the moment it needs to be diagnosed or at least treated as such.
• Your pains being mainly on your left side does not in itself contradict fibromyalgia, but gives a clue as to causes/triggers and treatment.
• Pain in phases, "flares", is typical for all chronic pain, not just fibro. If we're attentive, we can often find out the causes, but sometimes it's very difficult and needs the ideas of many different practitioners.

So my bottom line is I'd try a detailed neurological exam (which may not find anything) and (even more...) different kinds of physiotherapy.

Personally, I can get all of my local pains down to 0-5%, despite severe fibro, and can pinpoint almost all triggers of these and my overall Ache - sometimes only in hindsight, using symptom, trigger and treatment tracking & analysis.

Hope there are some ideas here for you?

 

[Wisenut]

Thank you for your reply.

I am sorry, I wasn't clear. Yes, in some ways the initial shoulder injury seems to be the catalyst but that injury is healed for several months now. Also yes the leg cramps were just for one time. But I don't think I was clear enough about the trapesius muscle. This is no ordinary stiffness. This is rgidity that prevents normal movement. Imagine everything is normal one day and the next you can't lay flat on a floor or reach out as far as you normally can or turn from your waist. It is painful! Shoot! So hard to explain!
The trapeseus, I believe, is actually the original catalyst for the shoulder problem!

Alas, being in Mexico and in a fairly rural area, I won't be able to try different forms of physio. Even when my doctor prescribed a massage and I used his prefered masseus I got one kind of massage offered. Take it or leave it. I am not even sure there is a physical therapist here!

Thank you for the attachment. I will read it.

 

[sunkacola]

JayCS has said what I would say, only much, much better than I would say it. To me, this doesn't sound like fibromyalgia.

I have lived in rural Mexico and fully understand the limitations in terms of available health care. Where I lived, any form of medical attention was an hour's motorboat ride away, and then not a city but a large town with only limited medical options.

To me this sounds like something that should be seen by a good doctor, maybe an osteopath (?). Since it started with an actual injury and keeps recurring, there could be something that could heal completely if it has the right treatment. If it is financially and otherwise feasible for you I would recommend you do whatever needed to travel to a place where you can get good medical attention for that.

The leg cramps may or may not be related to the shoulder...we cannot really know. But there are many things one can do for leg cramps while you work out how to see a good doctor. TENS, taking calcium and magnesium is where I would start. Also, good quality marijuana (usually widely available in rural Mexico) can help to relax those muscles, or a muscle relaxant medication if y ou prefer not to use marijuana.
Best of luck to you and let us know if we can be of any further help. You are welcome here whether or not you have fibromyalgia.

 

[JayCS]

I am sorry, I wasn't clear. Yes, in some ways the initial shoulder injury seems to be the catalyst but that injury is healed for several months now. Also yes the leg cramps were just for one time. But I don't think I was clear enough about the trapesius muscle. This is no ordinary stiffness. This is rgidity that prevents normal movement. Imagine everything is normal one day and the next you can't lay flat on a floor or reach out as far as you normally can or turn from your waist. It is painful! Shoot! So hard to explain!
The trapeseus, I believe, is actually the original catalyst for the shoulder problem!

No worry, attempting to describe our symptoms is the first and most important part of the work, and an ongoing process. What I just do is try to sort things as they come across, so "you" can check if that's what you meant and try to get it clearer for yourself. You didn't know where to begin, and now have maybe realized that you'd neglected the role of your trapezius.

Cause / order:
Ah, OK, so that'd mean you first had the stiff trapezius ("traps"), maybe forgetting or not realizing that, then tried to move and tore the connective tissue in your shoulder in the process? Not much difference: One and the other are both viable ideas which can help. Often I find the truth is in between or behind the alternatives. Main point is we find starting points and try finding something to get those improved, whatever they are. And if the seeming starting points don't help, we can look for a common point for several of the symptoms, in this case praps neuropathic, and if we can't find a common point, then we just cycle thru each of the symptoms, trying to find something that prevents or alleviates them.
Trapezius:
Putting this idea first would now mean that it started and starts muscular (as in "pinched") and then becomes neuropathic (as in "nerve")? So if the muscles are primary, it's them that need to be treated, not the nerves like the sciatica etc.. So not neurologist after all, mainly physiotherapy.
It also sounds as if you're sure it's your back muscle, and none on the front - although they are and may well be related. Like trigger points show us that they can be quite a distance from the muscle pains they "treat".

Alas, being in Mexico and in a fairly rural area, I won't be able to try different forms of physio. Even when my doctor prescribed a massage and I used his prefered masseus I got one kind of massage offered. Take it or leave it. I am not even sure there is a physical therapist here!

OK, that calls for the use of youtube, there are many many videos with exercises, stretches, acupressure and trigger points for the trapezius and all part of the body for us to try. Often made for people internationally who have no access to medical care, financially or facility. After 1.5 years with a good expert acupressurist, I was very surprised to find that starting self-applied acupressure using youtube solved many symptoms she hadn't. I just type in a fairly good description of the muscle, symptom whatever, learn from the first videos what fits and what doesn't, adapt my description, and usually I need less than about 8 videos to find the solution. One of many examples: my clavicula pain regularly flares up, like at the moment. I'd broken it 20 years ago and it's sometimes gone for years, fibro brought it up again, but now I know about 5 things I alternately do for a few minutes every day and it's down and gone inside of a few days. If I don't do anything it builds up or close muscles become involved too, or seem to alternate, stops me sleeping, other things can stop me moving etc...

That any help?

 

[sunkacola]

Oh, and don't forget that there are doctors who will see you over the internet these days. You can have an appointment with someone, talk about the problems, and then decide if you like that doctor enough to go to the trouble and expense of travelling to see them.

 

[SH3]

Have you had your neck xrayed or an MRI? I went through something similar. I hurt my shoulder and in the process of figuring out why it wasnt really healing I found out that I had degenerative disk and arthritis in my neck. My body was trying to support the area better by thighting the muscles. At times, like you, the muscles would be so tight I could barely move. Those tight muscles ultimately lead to my shoulder injury. I had daily tension headaches and sciatic issues. I went to physical therapy, I continue to do this at home now and see a chiropractor a few times a month. It has helped a lot but not 100%.
I believe this is actually the root cause of my issues but my dr really thinks its fibro.
I hope you figure it out.