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Old 09-30-2022, 01:14 AM #21
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I have used acupuncture during the initial stages of the condition. It seemed to help a little. Then I stopped since Doctor Of Oriental Medicine wanted me to come in 3 times a week. That was about $1000.00 a month, so I stopped. I started up recently and after 10 sessions stopped as I felt it was not working.
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Old 09-30-2022, 09:43 AM #22
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I considered acupuncture but haven't tried any yet
I have done self acupressure at times
I'm a bit of a do it yourself person, so I explore those things first, unless something requires seeing a Dr .

I'm curious about those with a fibro diagnosis.
Are your muscles or skin painful when touched?
Or am I reading that symptom wrong?

I don't have that but nearly all other fibro sx, but most do overlap with the MPS, and I do have the RSI injury connection to fit with MPS..
I did take way too much Advil/Motrin while trying to keep working with RSI pain. I feel that messed up my gut health..
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Old 09-30-2022, 11:27 AM #23
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I have severe Allodynia turning into painful numbness. I don't feel as though I have muscle pain unless I work out for hours, so no . It seems to be very progressive now and unstoppable. Gabapentin does not really work very well. I use Cymbalta for depression and nerve pain and I don't believe that has been helping much for either. I have had nerve pain for many years and I know what it feels like. I am not sure that the Fibromyalgia diagnoses is accurate. It is just another word for what I have, nerve damage, and a lot of it. I feel that all of the efforts I made was being negated by the drugs I have been taking, then there was a problem. And I assure you, the things I have been doing have not been There is really no way to really find out exactly what occurred. But I would like some admittance that some of these possibilities were relevant, but I don't think I will ever get it. That is the frustrating part. Thank you for listening to my rant. I am glad that this thread has gathered so much attention.
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Old 09-30-2022, 12:13 PM #24
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I understand your frustration about not getting answers to your questions about possible causes or exacerbations. It took 17 years to find out the cause for my peripheral neuropathy which was sarcoidosis caused by toxic exposures. I knew it was the toxic exposures that were the cause but not the sarcoidosis being the actual mechanism of damage.
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Old 09-30-2022, 04:06 PM #25
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Central Sensitization

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Old 09-30-2022, 04:24 PM #26
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Quote:
Originally Posted by Jomar View Post
I considered acupuncture but haven't tried any yet
I have done self acupressure at times
I'm a bit of a do it yourself person, so I explore those things first, unless something requires seeing a Dr .

I'm curious about those with a fibro diagnosis.
Are your muscles or skin painful when touched?
Or am I reading that symptom wrong?

I don't have that but nearly all other fibro sx, but most do overlap with the MPS, and I do have the RSI injury connection to fit with MPS..
I did take way too much Advil/Motrin while trying to keep working with RSI pain. I feel that messed up my gut health..
Jomar, There are too many overlaps for me due to my Immunotherapy treatment (my Immune System is pushed into overdrive) affecting bones, joints, muscles, bladder, bowels etc. I also have had many of the symptoms listed for fibro syndrome long before I started this treatment though (Also things like kyphosis, Carpel Tunnel). So who knows. When do side effects from one thing become a whole new condition?

I don't fit all criteria for FMS either (e.g. cortisol. Never had a problem. Gets checked every 6 weeks) but it is a syndrome and it does change around all the time and not all people will have the same. Mostly my muscles feel as if they're torn or ripped. That's the best way for me to describe it but it's so complicated by all my other pain. have many other symptoms too of course but they can also be attributed to other conditions. I do not have allodynia. Ido have tender points just before some of the joints especially at wrists and in back, shoulder area but it's complicated these days as the pain heightens just by moving.

I do have hyperalgesia in my PN areas but I also have numbness in those areas as well. Hard to explain having sharp, sharp pain like knives but at the same time having numbness.

- If you have PN all over body then that's very hard to sort out. As I said earlier, I know where my PN starts and stops. It's almost a line. I do not have neuropathy all over my body. I would be feeling sceptical about your fibro diagnosis as well, JKPHOTO.

- In a general practice setting, it would be usual for doctors to ask a patient they have diagnosed with Fibromyalgia if they'd like to see a Psychologist. I get asked in the Oncology setting. Stress and anxiety and depression are common in these painful conditions. I make a joke about it but I do understand the need for relaxation techniques and perhaps CBT and more to help deal with pain.

Last edited by Lara; 09-30-2022 at 04:49 PM.
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Old 10-03-2022, 10:33 PM #27
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I feel a need to discuss this further with the doctors. But if I come across as too annoying or a complainer, could they terminate my care? So this is what bring me back to this site. To discuss what could have caused all of this damage and pain. But somethings are still going to remain a mystery.

Last edited by JKPHOTO; 10-03-2022 at 10:47 PM. Reason: correction
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Old 10-04-2022, 12:49 AM #28
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Quote:
Originally Posted by JKPHOTO View Post
I feel a need to discuss this further with the doctors. But if I come across as too annoying or a complainer, could they terminate my care? So this is what bring me back to this site. To discuss what could have caused all of this damage and pain. But somethings are still going to remain a mystery.
Doctors can indeed terminate your care. I've heard of doctors who have fired patients. They wouldn't say that the reason was that the patient was too annoying or a complainer, and that probably wouldn't be the entire reason. They do sometimes take patients to task if the patients aren't "compliant"--if they don't follow the recommendations the doctor has given.

This is usually stated somewhat like this: "If you're not going to use the treatments I've recommended, what is the point in continuing to see me?" They make it sound as if it's you who have fired them.

A good doctor (IMO) wouldn't go this route unless the recommended treatments were the only option and the patient's life depended on having those treatments. Even then, a strong case can be made for a doctor who cares enough about the patient to respect the patient's wishes and continue to deal with the issues that the patient brings in.

I can't imagine a doctor telling a patient that he/she is too annoying or a complainer though. After all, it's in the doctor's interest to keep patients, not drop them. Most doctors in my experience make an effort to follow the patient's lead, and they are usually very familiar with complainers and patients who can be annoying.
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