Not sure if it is Fibromyalgia or something else
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Hello, I am 21 years old and was diagnosed with Fibromyalgia last year by my Rheumatologist. It started with chronic back pain and fatigue about 7 years ago. I have had several imaging and lab tests done which all came back normal. My mother has fibro, so after doing the trigger point test, my doctor came up with the diagnosis. Since then, i have tried all of the medications that are used tot reat this including NSAIDs, narcotics and muscle relaxers with no relief. Because of that, it makews me question if it really is Fibro. I figure at least one medication should have helped even a little bit. Also, FM is associated with "wide-spread" pain, but mine is ALWAYS in my back and shoulders, never anywhere else. My muscles are very tight and get knots very frequently. I am just wondering if anyone else has any idea what else it could be. I went to physical therapy for 2 years with no improvement which even the therapist was stunned by and I have seen 2 pain specialist who were unable to help, also. I've had 2nd, 3rd, and 4th opinions with Rheumatologist and Neurosurgeons throughout several states with no answers and I do not know what to do anymore. Any thoughts owuld be appreciated. Thank you in advanced. -Andrea
0 likes, 13 replies
Magpie2me BerwickAL
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juliect45 BerwickAL
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Hi
It's def frustrating but for me the pain seems to increase with time. Since there is no cure they continue to try and give options in hope it helps the pain feel better 🙂 I'm on 8 yrs
kaz_40 BerwickAL
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juliect45 kaz_40
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Snoopydog BerwickAL
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Hi Andrea this us snoopy. Yes those are symptoms if fibro. And yes sometimes it takes more then one pain med to help. No you won't be completely pain free but there's help. Also I found doing massage made me worse. So I stopped. I fund using mild heat helps somewhat. Be careful as too much heat will make it worse. Some find they have pain more in one area of the body then others. As for me I have body wide pain. With my legs being the worst.You will find even some little things make it worse. When you have the bad days give your body a break and let it rest. Don't push yourself as it makes things worse too. Hope some of this helps . From snoopy.
jessixa92742 BerwickAL
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juliect45 jessixa92742
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It's so exhausting to go to one dr after another. For a month I've had bad pain around my ribs my whole stomach is so sensitive went to do X-ray today then went to walk in and they see nothing and want me to go to Hosp for cat scan when I can't even lay on my back. I feel so defeated it's heartbreaking
bronwyn97278 jessixa92742
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Hi Jessixa and BerwickAl; I think Jessixa may have given BerwickAl the answer she could be looking for. In my case, mainly, it is the "burning and tightness" of the shoulder/scapula muscles that first sent me off for help, and it took many years to get a diagnosis of Fibro and other answers. As to finding something that works to relieve this, the only thing that really does for me is my Endep (Amitriptylline). There are other meds for this type of pain, but some work for some, and others not (I know of one who only gets this pain, and Lyrica works for her). It is only after many years that other symptoms come, and then we need to look at the other ways of treating these that the list of meds increases (and this may not be the case for all either......perhaps if one finds the stressor/s first, and recognizes how to stop these, there maybe no further deterioration??) As for the Acupuncture, I too, gave it one trial, on advice from someone, and it was sooooo excruitiating (which if we think about it....being a stimulant for nerve endings), so had to Stop that only after 10 mins or so.; hence would never advise anybody to trial this.
?I guess for both, if you havn't trialled Endep, then give it a go, (10 mgms at night), and note when your pain is worse....is it worse after stress/exercise/work/change in temperature??? (for many years, I always thought Everyone got the same pain in muscles over scapulas when using sewing machine etc, lol ). Many say change in temperature is very noticeable, and is so for me (heat makes mine a LOT worse....whether it be a hot bath/increasing the air-con in winter months or the heat of summer)................hoping this helps a little?? Bron
BerwickAL bronwyn97278
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I have tried both amitriptyline made me suicidal, and thee Lyrica and Gabapentin make me anuseous,dizzy and uncoordinated. I was so despirate for something to work i even retried both of them in hopes it'd change, but no luck. I have had my dr check Vit D and magnesium levels which are all completely normal. I have done dry needling, massage and hydro therapy, sine manipulation, biofeedback, the works.
I am okay with the fact maybe there just isnt anything that will help. I just wanted to be sure it qwasnt actually something else that could be treated. I appreciate everyone taking time to read and respond. I hope everyone finds their solution!
bronwyn97278 BerwickAL
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Hi BerwickAl; sorry if this is not a wanted reply (as I noted above that you were saying a thankyou to all", as if none of us had really helped you: and am so sorry if this is the case. However, am wondering if when you say you have seen a "neurosurgeon", was it a Neurosurgeon, or a Neurologist? the difference being, that one operates on the brain, but the other specializes in nerves/and or the related conditions to same....if not a neurologist, and from the what you say "re not all over body etc", then this maybe an option to find some answers??? Many of us went down this track first, as our symptoms are very similar to other neural conditions, and I myself was referred here first, as they thought it was another medical condition. I feel that if you are not convinced, then maybe an MRI, concentrating on other possibilities may be something to consider?? This avenue may then find you the real treatment that you need?
?Another question is, were you taking the above mentioned meds all at the same time, or separately? meaning, say taking Amitriptylline 10 mgms for a period of say 4 months, with no other med, and then if not satisfactory, getting it out of your system, and then trialling something else for a period of time? Most meds take a while for our bodies to adjust to a new medication, and can cause side effects initially; and yes I too agree that the Gabapentin can cause dizziness, if taken in large amounts for too long. For myself, I only take this medication when Particular Nerves (those that were damaged when a "so-called" muscular-skeletal specialist injected my lower back with acupuncture needles, and ended up "Knotting the Nerve Endings. They do not bother me All the time, and hence this is not a medication that I take every day. Same as for Lyrica, this too did not go well for me, either, and did nothing for my pain (but do know that it works for others).
?As for the levels of Magnesium etc in bloods, I think most of us have had the same positive results, but do find that supplements have helped us (especially with the "cramping of extremities at night", and I take a Multivitamin supplement with everything in it. Even when we get ourselves checked for Thyroid status, this too comes back within normal limits, but for those of us who have supplemented with other sources of Thyroxin, it seems to have had some benefits.......but also need not to do, as I did, and over medicate......try researching this line of information, and see if any of your symptoms relate to the answers for Thyroid Problems??? Well best of luck, and am interested in how you go from here. Bron
Jmo76 BerwickAL
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Your reply to Jmo76
bronwyn97278 Jmo76
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No Jmo; I havn't had the need for a Dopler Scan, and feel that if it were a DVT, this does not affect your foot/ankle so much, as more into "pain, hardness of calf, and swelling" of calf area, is the sign/s of a DVT/clot... let us know what the answer/s are for this pain: and also tell us more about the type of pain.......is there swelling of ankle/foot.....if fluid retention secondary to some of your medications etc. Will be interested to know what happens for you. Bron
Jmo76 bronwyn97278
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Hi negative doppler which I figured it would be. That's what my rheumatologist wanted. It was a different more localized pain. The ankle pain is new. Being a nurse I think too much lol.