Extreme fatigue and pain

Posted by rvickert @rvickert, Jun 9 7:54am

I currently have stenosis in cervical, thoracic, and lumbar regions of my back with a pinched nerve root at L2. I have had 4 surgeries at the lumbar level involving all disks. The last was last year. I understand disc degeneration but this seems fast.

For the past 20 years, I have had severe fatigue, weakness and chronic pain which seems to worsen daily. I was diagnosed with Fibromyalgia many years ago and have a positive ANA, rheumatoid factor and see rate of 47. There are lots of tiny lumps that can be felt in my arms and larger ones in my legs and stomach area. These hurt and cause bruising when palpitated.
My children are exhibiting the same symptoms as I have at close to the same age of onset (ages 30 and 32) They complain of back pain as well. I have difficulty thinking often as if digging through a dense fog.

Is there any single illness that would exhibit these symptoms? Doctors run tests, determine nothing and say other symptoms are not in their area. I need help! Any suggestions are appreciated.

Hi @rvickert, I added your discussion to the Autoimmune Diseases group (https://connect.mayoclinic.org/group/autoimmune-diseases/) as well as the Spine Health group thinking that some members of both may have some input to your situation, like @becsbuddy @vickiekay @rarelybees2889 @judyannmac and others.

You may also be intersted in these discussions:
– Autoimmune Diseases and Fatigue https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Chronic pain in every cell… https://connect.mayoclinic.org/discussion/chronic-pain-in-every-cell/

What specialists have you seen? A rheumatologist?

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Hello @rvickert There is nothing worse than fatigue, is there? Has this been going on for awhile? You said that you have fibromyalgia-is it controlled? Like @colleenyoung , I would recommend that you see a rheumatologist. They are more educated than most doctors on autoimmune diseases. Are you near a large medical center or university hospital? If so, ask your doctor for a referral or just call and get an appointment. Also, start a journal or notebook listing all the strange symptoms you may have, starting with the bumps under your skin.
With most autoimmune diseases, it can take awhile to diagnose because of the odd symptoms. Mine started with 8 months of vomiting and was finally found to be an inflammation in my brain.
Advocate for yourself! Please get back with us and let us know if you’ve found a doctor. OK?

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Hi Becky! I have seen a rheumatologist and have another appointment with a neurosurgeon. The Rheumatologist discounted the bumps and the pain as fibromyalgia which is the common response I’ve had with all doctors here in Mississippi. He said I may have Sjourn’s which would not cause pain that can’t be controlled with Tylenol. He did xrays of my hands and feet, a dry eye test (which was positive) and lots of bloodwork which is normal so far with the exception of the ANA. Other results aren’t back yet. I’m very discouraged and sad that my kids may have to go through this. I don’t like pain meds and take as little as I can. I have tried many Fibromyalgia meds and none seem to help. I got my Masters degree in 2013 with a 4.0. Now I do good to carry on a halfway intelligent conversation for a few minutes. Thanks for your concern and response.❤️

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@colleenyoung

Hi @rvickert, I added your discussion to the Autoimmune Diseases group (https://connect.mayoclinic.org/group/autoimmune-diseases/) as well as the Spine Health group thinking that some members of both may have some input to your situation, like @becsbuddy @vickiekay @rarelybees2889 @judyannmac and others.

You may also be intersted in these discussions:
– Autoimmune Diseases and Fatigue https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Chronic pain in every cell… https://connect.mayoclinic.org/discussion/chronic-pain-in-every-cell/

What specialists have you seen? A rheumatologist?

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Thank you. Yes, a rheumatologist, family physician and have an appointment with a neurosurgeon and dermatologist.

Liked by lioness

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@rvickert Hi and welcome to connect as others have said . I'm glad you are going to see a neurosurgeon hopefully he will be able to help you ,don't let him fluff you of like some do . Be proactive with him and with your health something is the cause of your fatigue and bumps . Have you thought about also seeing a Endocrinologist ? He can check all your hormones to see if there is anything matter there . Just a thought . Hope you get some answers

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@rvickert

Hi Becky! I have seen a rheumatologist and have another appointment with a neurosurgeon. The Rheumatologist discounted the bumps and the pain as fibromyalgia which is the common response I’ve had with all doctors here in Mississippi. He said I may have Sjourn’s which would not cause pain that can’t be controlled with Tylenol. He did xrays of my hands and feet, a dry eye test (which was positive) and lots of bloodwork which is normal so far with the exception of the ANA. Other results aren’t back yet. I’m very discouraged and sad that my kids may have to go through this. I don’t like pain meds and take as little as I can. I have tried many Fibromyalgia meds and none seem to help. I got my Masters degree in 2013 with a 4.0. Now I do good to carry on a halfway intelligent conversation for a few minutes. Thanks for your concern and response.❤️

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I take Lyrica for my fibromyalgia and relieves the fatigue and aching pain I also take good quality vitamins and anti oxidants. My Dr checks my B12 level every 6 months.

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@wisgrama

I take Lyrica for my fibromyalgia and relieves the fatigue and aching pain I also take good quality vitamins and anti oxidants. My Dr checks my B12 level every 6 months.

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@wisgrama That's all good My by pass was in the 96 I have changed the way I ate ,get rid of sugar exercise lots of water and good sleep I have fibromyalgia also take a regimen of vitamin minerals for this

Liked by swift, rvickert

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@rickvert May I add my welcome to Mayo Connect, also. I don't know how far away you may be from a Mayo Clinic campus, but is there any way that you could consider having a team there review your case? There are campuses at Rochester [Minnesota] , Scottsdale [Arizona], and Jacksonville [Florida]. Especially in light of the fact that your children are exhibiting some of the same symptoms that you also have, there may be something genetically going on. Also we can't discount the possibility of an environmental issue causing some of these things! An infectious disease Dr may be of help. Getting to the root of extreme fatigue can be difficult at best, so many variables to sort out. I look forward to hearing more about the outcomes of appointments.
Ginger

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@lioness

@rvickert Hi and welcome to connect as others have said . I'm glad you are going to see a neurosurgeon hopefully he will be able to help you ,don't let him fluff you of like some do . Be proactive with him and with your health something is the cause of your fatigue and bumps . Have you thought about also seeing a Endocrinologist ? He can check all your hormones to see if there is anything matter there . Just a thought . Hope you get some answers

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Hi lioness! Thank you. I hadn’t thought about an endocrinologist.

Liked by lioness

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@gingerw

@rickvert May I add my welcome to Mayo Connect, also. I don't know how far away you may be from a Mayo Clinic campus, but is there any way that you could consider having a team there review your case? There are campuses at Rochester [Minnesota] , Scottsdale [Arizona], and Jacksonville [Florida]. Especially in light of the fact that your children are exhibiting some of the same symptoms that you also have, there may be something genetically going on. Also we can't discount the possibility of an environmental issue causing some of these things! An infectious disease Dr may be of help. Getting to the root of extreme fatigue can be difficult at best, so many variables to sort out. I look forward to hearing more about the outcomes of appointments.
Ginger

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Hi Ginger! I don’t know how Mayo handles patient care. I am 10 hours away from Jacksonville so I can’t see any way of staying there long enough to get any help.

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@rvickert

Hi Ginger! I don’t know how Mayo handles patient care. I am 10 hours away from Jacksonville so I can’t see any way of staying there long enough to get any help.

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@rickvert May I suggest you look into how to get an appointment or second opinion, by going to this link. http://mayocl.in/1mtmR63
You do not necessarily need to be referred by your doctor.
Ginger

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Have you been diagnosed with fibro? Have you ever heard of chronic fatigue syndrome, which is a completely different disease that fibromyalgia, although they do have some similarities…

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@rarelybees2889 I was diagnosed with Fibromyalgia 20 years ago. I’ve tried all the meds that are supposed to help with no results. I don’t know if chronic fatigue was ever considered.

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You mentioned the pinched nerves with just about every area in your back. Have they looked at or tested for tethered cord syndrome? It’s very rare but is beginning to get some traction regarding a basis for chronic fatigue like syndromes. Dr Nancy Klimas at Nova Southeastern in Florida is an industry leader. Also, Jennifer Brea. My mother has chronic fatigue and has just about everything you have mentioned. How is your immune system? Do you constantly run temperatures? What about vision, digestion, food sensitivities, allergies, light sensitivities, etc?

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Does anyone know if thousands (maybe not quite that many) of tiny bumps which can be felt but not seen mostly on areas with muscle are part of fibromyalgia? They hurt when pressed and some are bigger than others. Attempts to break them up usually results in bruising. This may be normal or a nothing problem. It is easily dismissed by my doctors but seems to be associated with my pain

Liked by terri672

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